The Life of Evan...

Evan's Tree House

2010-04-25T20:59:00.002-07:00

Hi everyone--this is Evan. Come see the play house my daddy has been building for me. It's the best!

This is what it looks like from the outside. The swings have been up since last summer. The house and steps are new. Since this picture was taken, windows have been added.

I can climb up the steps all by myself (getting down is another story...)

Since I love things that spin, daddy put up a captain's wheel. I can make it go. I don't have a roof yet, but that's coming next.

The windows are not quite finished--daddy's going to put some cross-pieces in so I don't fall through (I like to use them as steps to climb higher!)

I wasn't too sure about this tire swing last summer, but I've got the hang of it now. There's some great spinning potential here.

My only complaint is we have a little bit of a dandylion problem. Other than that, it's everything a boy could ask for!

March for Babies 2010

2010-04-25T20:59:00.001-07:00

Yesterday was March for Babies at the Yakima Greenway. It was sunny, but windy. At least it did not rain--or snow--on us.

Team Evan's CHARGErs 2010 included Auntie Jen, Grandma Key, Sarah, Evan,& Jeremy. Our neighbor & friend Renee is not in the picture. Our sign has pictures from the previous four years we've walked--time sure has flown.

All registered and ready to go.

There were a lot of participants this year (Jeremy is three heads in from the right).

What a character! Evan was really excited about the people dressed up in costume. Ronald McDonald was really great--we saw him at several points during the day and he remembered Evan each time. Evan gave Ronald "five"--it was so cute! I think Evan remembers Red Robin (from previous March for Babies, and possibly because I like to eat there)--he ran right up to the Robin and grabbed his leg. Evan tried to avoid the [Domino's Pizza] Noid--can't say I blame him there.

Walking along...

Heading home!

Three months in a nutshell...

2010-02-20T09:14:00.000-08:00

Jeremy told me this morning Evan's preschool teachers mentioned how much they liked the "Naked Baby" post. It reminded me that Evan does have a following who are anxious for updates on his progress. So here goes, Top 10-style, is what he (and we) have been up to lately.

#10: Loves to Spin

Some things will never change. The Sit-n-Spin is still Evan's favorite toy--it's got to be a sensory-seeking thing. Evan mixes it up by modifying his spinning enviornment. He likes to spin in the dark (our closet or laundry room with the door shut is his favorite), but in a pinch a bucket over the head will do.

Evan's balance is much better these days, but far from perfect, and it still amazes me to see him pick up that bulky Sit-n-Spin and tote it around the house. He would spin for hours on end if we'd let him, so we do have to hide the Sit-n-Spin from him after a while. Evan remembers our favorite hiding places, and when he wants to spin he'll take you by the hand and lead you to the room he thinks it's in (he will even go so far as to put your hand on the doorknob or push your finger down on the latch of the baby gates...)

He also likes to vary the surface he's spinning on--he loves to be up on top of the coffee table. Anything that will tip the Sit-n-Spin at an angle for him is also good--he will put a ball or a shoe or some other toy underneath one side to get some tilt. The other day Jeremy had to tip the coffee table up on two legs for some reason. Evan grabbed his Sit-n-Spin and ran right over--the thought of spinning up on the coffee table AND at an angle was almost too much for him! Unfortunately Evan, there are some limits for your safety!

#9: Bosley Loses a Toe

Not sure how this happened, but one of our cats came home with a claw pulled completely out. Because of infection, the vet had to amputate part of his toe. Bosley spend the night at the clinic and came home to some serious pampering by me (Jeremy is not a fan of Bosley--his act of kindness was loading him up in the cat crate and taking him to the vet). Now Bosley has gotten used to being an "inside" cat and think's he's entitled to being in the house. Bosley thinks he should be the center of attention and doesn't understand why Evan could care less about him. He will rub up against Evan, who pushes him away.

#8: Potty-Training--the Saga Continues...

Still working on this. If Jeremy or I (or Grandma) takes him, if he has to go he will. He gets to put a sticker on his chart every time he does it, and has a chart full of stickers right now. Evan still can't or won't tell us if he needs to go, so it's very hit or miss.

He can strip off all his clothes in a matter of seconds. About a month ago at preschool, his aid Sherri didn't catch him until Evan had his pants and diaper off and peed on the purple circle on the Circle Time rug. I'm just glad it was a #1 accident...

#7: Valentine's Dance

Our local Parent-2-Parent group held a fundraiser/family night Valentine's Dance. We took Evan, and he had a great time. He got to play with his good friend from pre-school. There were all kinds of lights for decoration. He danced and was danced around. I wouldn't have thought a 4 1/2 year old would enjoy a dance so much, but he sure had fun.

Our Valentine :)

Evan and his friend C. from preschool (C. really likes Evan--he even mimics the noises Evan makes and is very convincing. He will also come up and hold Evan's hand--and Evan lets him. For two kiddos with sensory issues, that's a big deal.)

Loving the lights.

#6: Drawing

The goal on his IEP is for Evan to be able to copy two straight lines. I don't know if he'll make that goal but he is making progress on making marks on paper with a writing utensil. He is also learning to use some adaptive scissors at school. Evan came home with a snowman last month that he helped cut out--it was very impressive.

#5: I Know How I Like Things, and I Want them that Way Only

Flexibility has never really been a strong point for Evan, and he is getting more and more opinionated and set in his ways. He will only wear jeans now for pants--cords, sweats, forget it. He is also very particular about shirt colors--red, orange, and navy blue are good. He insists on having the cap screwed back down on his feeding bottle between pours.

#4: Cars and Their Troubles

Last month, we found out Jeremy's truck was sick (engine had a cracked head). Jeremy was able to buy a used engine, and as we speak is putting the finishing touches on the install into his truck. Thankfully, we have neighbors with all the necessary equipment for Jeremy to borrow.

While his truck has been out of comission, Jeremy and I have been sharing my car. A few times, he has had to resort to driving his Mustang. When he takes Evan out for a drive in the Mustang, he always gets looks...we're not sure if it's the general condition of the car (work in progress), the new vanity plates, or if people just aren't used to seeing car seats in the front seat.

#3: Drinking Foutain, Home Edition?

Evan loves the drinking foutain at both his schools. In two hours of class, he will go get a drink 8 times (Jeremy counted one day). He actually is swallowing the water, too. Because he likes it so much, and is more safely able to control how much he's getting as opposed to a cup, Jeremy was thinking about putting a drinking foutain in our bathroom at home. We looked online last night--drinking foutains are not cheap, so this will have to be a project for down the road.

#2: Christmas in the Bay Area

We spent Christmas with Jeremy's family this year. Evan got to ride in a plane for the first time, and he did fantastic. Jeremy got to have a burrito at Gordo's (he misses them all the time up here). Thank you Grandma Anna :)

The holiday was extra special because the whole family got together to make a memorial area for Jeremy's Grandpa and Grandma (both of them passed away in 2009). Jeremy's Uncle Richard cleared off an area in the El Cerrito hills to scatter both sets of ashes, then we spread seeds of native grasses and flowers. It was a beautiful afternoon.

First airplane ride

Jeremy, his sister Jessica, and mom Anna

Evan and Aunt Barbara

Spreading out seeds at the memorial

Evan loves daddy

#1: Evan Gets a New Aid at Developmental Preschool

Evan was lucky to have Sherri as his aid for a year, but life pulled her in a different direction. After a long search, Kelsey was hired to be Evan's new aid and she started last week. Kelsey has worked with Evan at Kidtivity lots before (and her mom is one of the preschool class teachers). We're excited to have her through the rest of the school year.

Naked Baby

2009-11-29T08:14:00.001-08:00

For obvious reasons, this will be a text-only post.

One of the new skills Evan has learned in the past month is how to take his shirt and pants off all by himself (he is getting close to being able to put them on also, but still needs our help).

Unfortunately, starting to take off one article of clothing (like a shoe) seems to initiate a strip-down sequence for him that doesn't stop until he's taken off everything--yes, everything. This is particularly alarming because although we're working on potty-training again, Evan is not potty-trained. Usually we find pee somewhere in the house following one of the naked episodes.

Evan has figured out nothing gets mommy or daddy's attention quicker than taking off all his clothes. So if we aren't paying enough attention to him, off comes his pants and pull-ups (and sometimes the shirt). This happened during Thanksgiving dinner...luckily all our guests were family!

Happy Thanksgiving

2009-11-29T08:07:00.001-08:00

Here are our photos from the day. Grandma & Grandpa Key and Auntie Jen came over to our house. My dad's 60th Birthday also happened to fall on Turkey Day this year (in case you were wondering why there are candles on the pumpkin roll).

Drinking Fountain

2009-11-11T19:24:00.000-08:00

Evan loves the drinking fountain at preschool. Jeremy says you can even hear him slurping up the water (background noise is too loud in the video).

Great Grandma Wilkins

2009-11-08T08:34:00.000-08:00

Evan's Great Grandmother Miriam Wilkins (Jeremy's mom's mom) passed away on Thursday. She was an active, very sharp 91 years old. The week before, she had fallen and broken her femur. She lost a lot of blood during the 6 hour surgical repair, and that caused her kidneys to fail. Thankfully, Jeremy got to visit with Grandma Wilkins on his trip down to the bay area earlier this month. This picture of her with Evan is from July 2007.

One of the things Grandma Wilkins was passionate about was roses. She had been President of the Rose Society and had organized many rose shows. There is even a Miriam Wilkins rose--this is the picture of it I found on the internet!

Grandma Wilkins, you will be missed! XOXO

Halloween

2009-11-01T07:56:00.001-08:00

Hey there--it's your friendly neighborhood Bat Boy, Evan.

Whaaahahahaha... Look out all you baddies!

Let's get this thing started up.

And we're off on the Batmobile!

Daddy and I are off to collect some goodies. We decided "on foot" would be a more efficient form of transportation.

The Crud

2009-11-01T07:40:00.000-08:00

So we've all been sick this past week. It started with Jeremy feeling the beginnings of a scratchy throat last Saturday night. He felt pretty crummy until Tuesday, at which point Evan started looking pretty sick. Sore throat, fever, aches, chills, coughing... Evan was not ever seen by his pediatrician (he'd been in the week before for suspected sinus infection, & was on antibiotics for that already), but because Swine flu is the only thing really going around right now, he got put on Tamiflu as a precaution. By Wednesday night, I was not feeling well at all. I stayed home from work on Thursday (which I never do, well almost never). I went to work Friday, but could barely talk. I had a previously scheduled doctor's appointment, so I got the once-over for my cold also. My physician's assistant doesn't think it's Swine flu, and recommended we all get the Swine flu vaccine as soon as it's available.

This is a little tangent but right now the vaccine in our area is only being given to certain health care providers. I called the health department to inquire, but because I'm just an optometrist and I don't have to see people who are sick, they wouldn't give it to me. I tried the "people are like 8 inches from my face all day" and the "if I refused to see everyone with cold symptoms, I would have no schedule" and even the "I have a son who has major respiratory issues," but no dice. I was mildly annoyed too, because it didn't sound like they were out of vaccine. I don't see why they couldn't give all the providers they were targeting first dibs, and then open it up to other providers. But that's not what they are doing. The parting advice was to make people wear masks (which is what we're already doing for people with symptoms). Gee, thanks.

School Days

2009-10-24T07:42:00.000-07:00

Evan had adjusted well to this year's routine of two pre-schools. Every once in awhile, he'll have a rough day at one class or the other but usually he does great on the days he goes to both (Tuesday-Thursday).

Sherri continues to be Evan's one-on-one aide at the Developmental Preschool. This fall, she is taking an ASL class--the same class and teacher Jeremy and I took last spring. We know the additional signing Evan sees from Sherri will help his receptive and hopefully expressive communication.

Evan is becoming more and more of an active participant in art projects at school. He will now place stickers, scribble lines, and sprinkle glitter. I used to look at "his" projects and admire the aide's handi-work, but it's pretty obvious now Evan's involved. He brought home a pumpkin face on a piece of construction paper--Sherri said that there were "x"s drawn where the eyes, nose, and mouth were supposed to do but that Evan stuck the pieces in the right places himself. He further embellished the piece with some attractively arranged Halloween foam stickers.

This past Tuesday was the class trip to the pumpkin patch. Sherri was sick that day, so Jeremy accompanied Evan. This was the first time Evan got to ride sitting in the regular bench seat (before he's always been strapped into one of those fold out child car seats). He loved it! He was belted in, but he just sat there looking out the window and having a great time. He was not as much of a fan of the actual pumpkin patch, but at least there was something redeeming on the field trip for him.

At Head Start, Jeremy has been Evan's "acting aide" while they've been looking. They just hired someone this past week, and she will be shadowing Jeremy and Evan next week. Her son had both a g-tube and trach, so she is very well-prepared to handle Evan's medical needs at school. We have met her before--this is one of those "it's a really small world" stories that requires some background explanation.

When Evan was an inpatient at Children's, the volunteers gave us several beautiful blankets. After he came home, I wanted to give back so I made some fleece quilts and donated them to Children's. A couple of years ago, we were at March for Babies in Yakima--and I saw one of my blankets on a child at the event. I went up to the family and asked them about the blanket. Sure enough, their son had spent a lot of time in and out of Children's and they were given the blanket by the hospital volunteers. As it turned out, this family was also from Ellensburg. And--you've probably figured out by now--this mom is going to be Evan's new aide at Head Start. Coincidence???

Short Cut

2009-10-24T07:26:00.000-07:00

I know I've posted before about our hair-cutting technique: Jeremy does it at home, while Evan's asleep. Usually this works great. We lay him on a towel, roll him on his side, cut and clipper that half of his head, then flip him over and do the other. The next day Jeremy makes any necessary touch-ups.

This did not work for Evan's last hair cut--at the half-way point he woke up! So for a day, Evan looked pretty scraggly with one side basically finished but the other just had a few random clips. Thankfully, the next night he slept soundly through the remainder of the procedure.

Down by the river.

2009-09-27T19:57:00.000-07:00

These are from out drive down to Vantage this afternoon.

Soccer may be in my future...

Time for my afternoon siesta.

School Days

2009-09-27T17:58:00.001-07:00

Evan started back at pre-school this past Tuesday. He goes to Head-Start 3 mornings a week and to Developmental Pre-school 4 afternoons per week. There was some concern about him getting too worn out with both, but by the end of the week Evan seemed to be adjusting just fine. Here are a couple pictures of him at Head Start.

Cardboard Box

2009-09-20T21:31:00.001-07:00

Grandma Anna mailed us some throw pillows earlier this week (they match a quilt she'd given us before; our bed looks so coordinated now--thank you!). Evan is not a fan of the pillows--he climbs up on our bed and throws them over board--but he was quite entertained by the box they came in.

He did it!

2009-09-20T21:29:00.001-07:00

Evan, after being caught in our bathroom, up on the counter, splashing water everywhere...

Special Sherri

2009-09-13T09:09:00.000-07:00

Every once in awhile you run into a person who is so kind and generous that you almost have to pinch yourself to make sure it's for real. Since Evan was born, I feel our family has been truly blessed in making connections with many people who are like this.

One of these special people is Evan's one-on-one aide from preschool, Sherri. Sherri has been working with Evan since January of this year, and they have a really wonderful connection. Sherri is learning ASL and has worked hard to implement his PT and OT goals into Evan's everyday classroom routine. She has even taken time to set up some playdates with Evan over the summer to keep up their relationship.

Thank you for going above and beyond Sherri! We really appreciate how much you care about our little guy.

Summer is winding down...

2009-09-05T21:02:00.000-07:00

Labor Day Weekend is here, so that makes it official--Summer is Over :(

This past week, there has been a definite chill to the air in the morning. In our garden, the tomatoes are (finally!) ripening and I'm finding our neglected zucchini plant is producing progeny the size of baseball bats. We've got invitations to back-to-school "nights" for Evan--two in fact. He will be returning to the Developmental Preschool four afternoons a week. Evan is also going to be going to Head Start three mornings a week, which happens to be very close to our house. We are excited to see the growth and development that will come from this additional time in class. School starts 9/22.

Today, Grandma and Grandpa Key came over and we all went to the fair. Fortunately, it was not hot. Unfortunately, it was because it rained the entire time we were at the fair, ranging from a slow drizzle to all out pouring. Early on we were able to stay pretty dry, ducking in and out of the exhibit halls. I skipped pictures this year because it wasn't long before we started to look like drowned rats. Jeremy and I got drenched when we went on some rides in the carnival (had to use up the tickets we bought for Evan, who only made it through one round on the carosel).

As an aside, I think you are officially "old" when rides go "too fast." We went on this one spinning roller coaster ride that went forwards and then backwards...all I can say now is my own personal image of what Hell must be like includes a never-ending version of that ride. I overhead someone sitting a couple cars ahead of us saying it was the 3rd time he'd been on it that day. You've got to be kidding me--my stomach and head have still not fully recovered.

I put Evan to bed about 45 minutes ago, thinking he was pretty tuckered out. I can hear him kicking the wall next to his bed so I guess that was not the case. Hopefully he will give in to sleep...I know after today I'm more than ready to.

Healthcare Reform and Evan

2009-08-17T23:59:00.000-07:00

I started this post a few weeks ago, thinking I might use part of it in a letters to our Congressman and Senators. I still may, but it needs some work. In the mean time I thought I'd share my thoughts...

I've been reading a lot of other people's stories about our current health care system--mostly about how "broken" the system is right now, and how it fails the people who are seriously ill. As much as I complain about insurance and the current system, I am very nervous about change.

As a "non-MD" provider, I am afraid that whatever change happens, my profession as a whole will get written out of the insurance loop and will have to start from square one fighting to get on insurance panels again, fighting to be paid the same amount as an MD for providing the exact same service. Even though the reimbursement rates from insurance companies are not the greatest, being on a provider panel does bring patients in the door. Very few patients are so loyal to a particular doctor they'll go regardless of insurance coverage. Loosing this would be a big blow to my ability to support our family.

But mostly, as a parent of a special-needs child, I am very afraid of what the future holds for my son, Evan. Evan was born with CHARGE Syndrome. He has a very tiny genetic error that has resulted in some very serious birth defects. In his short four years of life, he has spent about 6 months in the hospital (including his first 4 months) and has had at least 10 different surgeries. Evan receives all his nutrition via a feeding tube because he can't swallow liquids or solids without aspirating. He has severe sleep apnea and uses a CPAP machine at night. He is profoundly deaf and does not speak or sign, despite 3-4 years of speech an occupational therapy. He makes a lot of grunting noises and displays a lot of behaviors that are best described as "self-stimulating" or "autistic-like." Needless to say, Evan's health care needs have been (and continue to be) substantial. He has not yet reached our insurance plan's lifetime maximum, but I have concerns that could potentially happen.

I worry when I hear or read about people not wanting to pay for "someone else's" health care. I worry if (when) there is not enough funding to pay for the care all of us need as a whole, choices are going to be made as far as who receives what care and the people who are seen as weaker or requiring the most expensive care will be be denied it. I worry--in a society where something like 90% of mothers carrying babies with Down Syndrome chose to terminate the pregnancy--that my son will be seen as less worthy of care than someone who is developmentally "normal." Evan, and other people with developmental disabilities like his, cannot fight for his rights. What happens when his father and I are not there to stand up for him? As unfair as it is to expect someone battling cancer or some other terminal illness to navigate the bureaucratic maze of the health care system, it's even more ridiculous to expect it of those with developmental disabilities.

Earlier this week, I saw a message being posted on Facebook by people who believed(something to the effect of) no one should be denied health care because they couldn't afford it and that no one should have to go broke because they got sick. If you substitute "have a child with special health care needs" for the "got sick" part, that's happening already. The intervention and therapies necessary to maximize the potential of a child with developmental disabilities is huge. The cost to provide even an "adequate" level is substantial. If they had to pay for it alone, I don't believe any middle-class family could afford it. Adding on top of this the cost of medical care (almost always much higher than for a typical child)--it's a formula for financial hardship. I worry that it's only going to get worse. You shouldn't have to declare bankruptcy because you have a child with health or developmental issues...but it happens.

I don't know what the solution is. I wish my worrying would lead to an answer...for Evan, for everyone.

4 years, 1 month

2009-08-16T22:17:00.000-07:00

At 4 years, 1 month you...

Can open doors--both lever and round knobs.

Are good at asserting your opinion, even without any words or signs--"I don't want to go to bed now," "I want to wear blue jeans and not shorts," or "I want daddy to walk with me around the coffee table...for the next 30 minutes."

Appreciate the difference between "big" and "small"...you will find two items that are very similar except for one is big and one is small and carry them all over the house with you. Yesterday it was my big heart and little Fleur-de-leis paper punches; today it was your big and tiny porcupine balls.

Know that the food/milk we feed you through your g-tube is "supposed" to get to your tummy by a different route. You eagerly wait for daddy or mommy to fill the vent tube with food and then dip your hand in so you can lick a taste from your fingers.

Have mastered the punching balloon. You've been working on swinging the balloon around by the rubber band for a couple weeks now, but as of today can make a steady sequence of punches.

Can climb up onto the kitchen table, stand up, and walk around in circles on the table top before mom or dad is hardly aware you've made a break for the kitchen.

Can take off your diaper, can pull on pants or put arms in shirt sleeves with assistance. Attempts to brush your teeth by yourself. Futile attempts to avoid bathing when daddy signs "bath time" include running the opposite direction, becoming a human noodle, stiffening body so it's difficult to maneuver you through the doorway, grabbing onto the bathroom door jam for dear life.

"Drink" small dribbles of water from a sippy cup.

Will clear all the baskets of toys from the second shelf of you cupboard, lay down on the shelf, and close the doors on yourself. This maneuver required daddy to anchor the bookcases to the wall.

Get up on your spring horse without any help, grab on, and start bouncing away.

Like to walk between daddy and mommy--daddy on the left, mommy on the right. If we are on the "wrong" side, you will stop walking and make us switch!

Know the "usual" place for things. You will try to close the baby gates behind you, close doors, put things back in the refrigerator, will pull the tabs off aluminum cans (guess you've seen us do that a few times).

* I "blog-lifted" the idea for this post from our friends Catherine and Reuben--we love your blog!

Grandma Anna!

2009-08-15T21:18:00.000-07:00

Grandma Anna has been visiting us. Sadly, tomorrow is her last day (and I can't believe we didn't start taking pictures until today...). We drove up to Cle Elum and Roslyn today for something to do. There was a car show in Cle Elum, and we went to all the little shops on Main Street that I drive by on my way to the office every week but never have time to go to.

I haven't been to Roslyn in ages. Originally the plan was to eat at Village Pizza, but Grandma Anna can't eat cheese...so that was out. We ended up going to the Roslyn Cafe instead which was really good. Then we checked out the shops in Roslyn.

Checking out Village Pizza...

If this mural looks familiar, Roslyn is where "Northern Exposure" was filmed. Evan was not being a good waiter inside the cafe, so Jeremy had to help him walk off some extra energy.

Walking with Grandma Anna (and, yes, that is a toilet seat on the pole in the background).

Evan at the Coal Miner's Memorial

Cochlear Implant Confusion

2009-08-15T20:57:00.000-07:00

It seems that the declaration we received from Evan's would-be CI surgeon, Dr. Sie, last spring was a little bit...premature.

I called the CI team to see what needed to be done to get things rolling for Evan to be implanted this spring. After review of Evan's chart, there were a couple tests that somehow didn't get done and so his candidacy has been temporarily revoked. The additional tests are tentitively scheduled for September. One of the "missing" tests was the psychologist eval of me (and I seem to remember her meeting with Jeremy, and then exchanging some emails with me in lieu of a face-to-face meeting). I guess they've decided the in-person meeting is not optional. Another missing data piece is aided and un-aided hearing tests in the booth. I tried to explain the reason they don't have any results is because Evan frieks out every time they put him in the testing booth (and they've tried it with him probably 5 or 6 times now, at least). I don't forsee this next time being any different, but we'll try again.

We had some renewed interest in pursuing a CI because Evan seems to be more interested in the little bit of sound he does receive. He really likes something we call "head talking"--he pushes his head (behind his hear) up against our mouth, and likes it when we talk right on his head. Maybe it's the vibration or maybe it just tickles, but it really seems like he's hearing something.

This response has also made us wonder if he would get any benefit from a bone-conduction hearing aid. We did have a loaner bone conduction aid for a short time when he was around 2 years old, and it didn't appear to do much for him. But we want to try it again. His audiologist at Children's has another loaner one to set him up with at his next appointment in September. Obviously, if the bone conduction aid is successful, Evan won't get a CI.

Sunglasses!

2009-08-15T20:50:00.000-07:00

Evan has decided that sunglasses are not nearly as evil as he first thought. Jeremy noticed that Evan was more frequently grabbing his sunglasses, putting them on, and then leaving them on for awhile. He bought Evan a pair of Cars sunglasses, and Evan will actually wear them :) Sunglasses today, tomorrow his prescription!

Horribly Neglectful...

2009-08-09T18:18:00.001-07:00

I admit that I have not been good about keeping Evan's blog updated the past couple of months. Work has been very busy this summer--the other Dr. in the practice is phasing out (which means I'm working more) and we're much busier than we were this time last summer. It's great for cash-flow, but not so great in terms of wanting to do things after I get home from clinic at the end of the day. And by "things," I mean activities other than crashing out in front of the TV or mindlessly clicking the mouse button to advance my way through Mafia Wars or Farm Town. I guess also another reason I'm not on here as much anymore is because I don't need it the same way I needed it when I started blogging.

The only thing to do is try to post a couple updates on the highlights for the past couple of weeks, and then move on with the promise to do better.

Second Half of July Update

2009-08-09T17:29:00.000-07:00

Evan is so funny when it comes to jeans. He doesn't really like shorts or pants unless they are denim. If he gets dressed in something other than jeans, he'll wear it for a few hours but sooner or later he sneaks off into his room and gets a pair of jeans--out of his drawer if he has to--and brings them to you to help him put on. He will also pick them out of the (clean) laundry pile, and sometimes the pair he gets is not his. Jeremy took these pictures of Evan getting into daddy's jeans...mister, you are way too silly sometimes!

Evan has leaned how to drink from a sippy cup! I use the word "drink" loosly, because very little water is actually being imbibed. But he has the idea of what the cup is for, and understands the process. Gotta start somewhere, right?

Testing with a lick first.

Wait for it...

Sucess!

Evan's actual birthday was July 15th, but we had his party last Sunday (OK, so this is technically August now...). We tried to keep it small, because Evan gets over-whelmed with lots of people around and kind of shuts down. So we invited over a few of the neighbor families to enjoy the wading pool. The wading-pool ended up not being such a great idea because we filled it on our back porch next to 3 fairly active wasp nests. Luckily our neighbor Scott is handy with the wasp killing spray and had a slip-n-slide that we set up instead. While all the drama was going on outside, Evan got up on the table and into his birthday cake!

Jeremy, Scott, and Neal--Benton Street buds.

The cake before Evan got to it...

...and after.

The horrors of singing "Happy Birthday" (or maybe it was the open flame).

Smooshed or not, McKenzie determined the cupcakes were still edible.

Vacation!

2009-07-11T20:46:00.000-07:00

We're back from our trip to the Oregon Coast earlier this week. The pictures are in reverse order (the ones at the end are from the first part of our trip), and I don't have captions yet. But here are the best pictures. Enjoy :)

Birthdays!

2009-07-11T20:39:00.000-07:00

July is a big month for birthdays with our family and friends...

Happy Birthday to Gabe, Nathan, Kaden, Jack, Sienna, and Evan (on the 15th). Welcome to the world baby Taylor (and belatedly to our new Cousin Mason also!).

Jeremy and Evan had a blast at Gabe's birthday party at the water park in Quincy. That's where J & E are in the photo above. Today we went to Sienna's birthday party--Evan was not feeling the fun so much. He's really not a fan of lots of people and unfamiliar surroundings--he can do one or the other, but both combined usually leads to a meltdown of some caliber. He did have a good time being bounced around on Sienna's trampoline though...

The Haircut

2009-06-23T21:56:00.001-07:00

Here is a picture of Evan's haircut the next day (better late than never, right???).

After being put off for several evenings, Jeremy and I collaborated on Evan's haircut tonight. We waited for Evan to fall asleep in his bed, and we brought him back out to the living room floor and laid him on his side to begin work (we have yet to try an at home haircut while Evan's awake--scissors and Evan's flailing around just seem like a bad combination). I started by trimming all his curls to a finger-thickness, first on one side and then flipping him over to complete the other. Jeremy followed with the clippers and cleaned up the back and the sides. We finished by vacuuming up the hair around and on Evan--he stayed asleep the entire time. If there is a perk to Evan's deafness, this has to be it.

IEP News

2009-06-14T15:40:00.000-07:00

We met with Evan's team last Monday. We don't have the final version of his IEP, we do know he will continue to have Sharie as his one-on-one aide all next year and the schoold district is paying for her to take a college-level ASL class at Central over the summer. There are a few other requests we had, that we are still waiting to hear back from the school district on.

Chalk

2009-06-14T15:33:00.000-07:00

I was weeding in the flower bed while Evan played on front porch. He found the box of sidewalk chalk. At first he was just picking up the pieces and dropping them (we have lots more pieces of chalk now, thanks to little mister). But he managed to sneak a bite or two also. We need to work more on what the purpose of chalk is! If you look closely at the first picture, you can see Evan has chalk all over his face.

We are still alive!

2009-05-31T12:11:00.000-07:00

My life has been crazy busy as of late...unfortunately, tending Evan's blog has fallen to the wayside. Here is an update of recent happenings, encyclopedia style.

ASL Class. The ASL class Jeremy and I have been taking since March ends tomorrow night. Unlike previous classes, our teacher is Deaf, and this gave us more insight on Deaf culture. We also learned more about ASL word order, which is what I have found the biggest barrier to becoming a proficient signer. The last class is a fun night, with games. We're bringing Evan with us to meet the class (Grandma and Grandpa Key usually watch him for us).

Baths. Evan still freaks out if you look like you're even thinking about putting him in by himself. But as long as he's in there with one of us, he does enjoy splashing around.

Cochlear Implant. Still haven't made any decisions here. I think we will most likely end up waiting another year, to give Evan some more time to outgrow frequent ear infections. This past winter he did really well. Another major factor is unfortunately our insurance--I have a suspicion the insurance company will cry "exclusion" and will not cover any of the cost of a CI. We do have financial assistance at Children's, but with all the budget cuts I don't feel good about asking for a non-life-threatening procedure out of the uncompensated care fund (a CI is around $40 K).

Doors. Still hasn't quite figured out turning a doorknob, but can push or pull open a door that's not latched (or locked) easily. No longer the barriers they used to be.

Getting Dressed. Evan has definite preferences about clothes and shoes now. He prefers red or orange shirts (sometimes to the point that you can't get a shirt of a different color on him). Blue jeans are the pants of choice, even if it's hot enough for shorts. If he happens to find a pair of jeans somewhere--a pile of clean laundry on the bed, or dirty ones from yesterday--he'll bring them to you to put on him. Sometimes, he even takes off his shorts first. I'm still not used to seeing him barreling down the hall with a pair of pants in hand. He also is very picky about shoes. He has a pair of brown ones he will wear--try to put any other pair on and it's fit time...

Insurance. Grrrrr...I shouldn't even start on this one, because I'm so angry about it. Our insurance company suddenly decided this year that Evan's therapy visits are not a covered benefit. Their reasoning is that Evan requires therapy because of a neurodevelopmental problem, and it's not "rehabilitative." That's right--someone can have a stroke because they won't control their blood pressure or they smoked for 30 years and speech or physical therapy for them is considered reabilitative; the insurance company will pay for 20 visits a year. But because Evan was born with delays that are classified as being neurodevelopmental, this falls under an exclusion in the policy. Never mind the insurance company has known about his diagnosis all along, and never mind they paid for his 20 therapy visits for the previous three years. I was informed I have the right to appeal this decision, which I plan to. Because I have all this spare time right now that I'd love to fill with writing letters to insurance companies. I understand things are tight and they are trying to save money, but we have a contract...they need to hold up their end of it.

Language. Kat, Evan's Teacher of the Deaf evaluated him last month. Evan's delays are significant, and the upside is that documenting them will help us get the services he needs on his IEP. But it's really hard to read on paper that your 3 1/2 year old has the expressive language level of a 10 month old baby and the receptive level of a 7 month old. What is even harder to read is that's a regression since the time he was tested a year ago. It's possible he had a really good day the first time he was tested, or a lousy day this time...but still.

Messes. Evan is very proficient at creating these now! New goal: cleaning them up.

Preschool. Evan has 2 more weeks, and then out for the summer. He has made some amazing progress this year. He hangs up his back pack in his cubby! Evan's aid, Sherry, absolutely loves him and is busy learning ASL. We are very fortunate that there's never been a shortage of good aids for Evan. Sherry is interested in working with him long term, and Evan really works hard for her.

Quick. I really don't know when this happened. It seemed like forever Evan was crawling and we were wishing for the day he would start walking. Now he runs--fast. If I turn my back for a second, he's off.

Swings. As I type, Jeremy is working on Evan's swing set in the back yard. We drove to Kirkland yesterday in search of a slide--we did find one. Unfortunately, Evan doesn't really seem to like slides right now. We tried to put him down a couple times, and he put the brakes on and in general did not seem so happy about going down. So we got him a tire swing instead--hopefully he will enjoy this one as much as the one at preschool. So far he is less than thrilled with his swing being in the back yard now. This boy does not like change (or grass...).

Twirling. This is so darn cute, but I can't catch it on video (every time he see the camera, Evan stops what he's doing to grab it from me). When he gets excited, Evan loves to dance around in circles--usually while looking up at the ceiling. I'm amazed he doesn't fall. He never seems to get dizzy!

Water. We broke out the Elmo sprinkler last weekend, and Evan had fun in the mist. Looking forward to some trips to the city pool, and if all goes well, to the water park in Moses Lake.

Daddy Resemblance.

2009-04-25T17:54:00.001-07:00

People always comment about how much Evan looks like me (and my side of the family). But look at these expressions side by side--those mouths look pretty similar :) I think Jeremy was about 2 in this picture. Evan's picture was taken last week at preschool.

March for Babies 2009

2009-04-25T17:54:00.000-07:00

Evan's CHARGErs participated in March of Dimes March for Babies for a forth time this year. Unlike the previous two years, it was pretty cold and windy so we took the short course this time--2.5 mile round trip instead of 5. Evan walked part of the way--usually holding on to a hand or two.

Walkers on the team this year were Evan (naturally), Jeremy, me, Grandma and Grandpa Key, Gary and Rosie Nelson, Angela, Connor, and Casey Peters, and several teachers from Valley View Elementary in Toppenish.

Last year, our friend with CHARGE Burke and his mom Chris walked with us also. They were not able to be here this year because Burke just became a big brother to twin boys, Levi and Judah. The twins were born March 14th at 33 weeks gestation. Both boys came home from the hospital a little over 1 week ago, and we walked in honor of Levi and Judah. Grandma and Grandpa Nelson walked last year and came out to walk today.

At the walk, we met another family from Ellensburg who frequently visits Seattle Children's--it's interesting how I found them. A couple of years ago, I made some fleece blankets and donated them to the hospital. Evan had received numerous blankets made by volunteers during his stay, and I wanted to return the favor. This family had one of the blankets I made--I recognized the fabric and asked them about it :) What a small world.

Here are some pictures from the day--Enjoy!

Gary and Rosie (Grandma and Grandpa to Burke and the twins) Nelson

The Peters family on the left (Connor and Casey are under the blanket--it was really cold!). Evan walking between Rosie and daddy.

The Yakima River is behind us...

Left to Right: Grandma and Grandpa Key, Rosie, Gary, Evan, daddy. This was the home stretch (and no, Evan didn't walk the whole way--he had lots of rest breaks in his stroller).

Evan's CHARGErs 2009 Team Photo

Teachers (and their families) from Valley View Elementary in Toppenish (they work with my mom)--there were so many people at the walk, we didn't see them until the end!

This is my new favorite Evan picture. He was playing on the support posts of a picnic shelter, having a great time. Look at that grin!

Deaf with a little "d"

2009-04-14T21:24:00.000-07:00

I did not realize the difference between "deaf" and "Deaf" until I had a child with hearing loss. With a little "d," the word just describes not being able to hear. Using the big "D," implies involvement in the Deaf community. Almost every book on ASL includes some background information about Deaf culture. Because Evan has profound hearing loss and because we are trying to teach him ASL, I assumed that he would become part of the Deaf community. In the ASL class Jeremy and I are taking, out textbook talks about Deaf culture in greater detail than what I've read before. The more I learn, the more I realize...it's complicated.

There are three requirements for being part of the Deaf community--1) a person must be deaf, 2) he or she must use ASL, and 3) the shared experiences that come from beign deaf. It makes sense that the Deaf community would be defined in this way--these shared experiences and challenges form a common bond that unites deaf individuals across racial, ethnic, or social divisions. A hearing person might be fluent in ASL, they might even have family members who are Deaf, but they will never be a part of the Deaf community because they are missing the first-hand experience of what it's like to have a severe or profound hearing loss. Another person might have a significant hearing impairment, but if they do not know ASL they will not be able to communicate with members of the Deaf community.

As I read the chapter, I started to get a sinking feeling. For months, I have referred to my son as being Deaf. But profound hearing loss does not equal Deaf. It's not that simple. Evan does not know ASL now, and realistically he may not ever have a good grasp on the language. This "minor" detail would be a deal-breaker in terms of being Deaf, of being part of the Deaf community. Evan is deaf with a little "d." I am disappointed because it's one more place where Evan does not really fit.

Easter Pictures

2009-04-14T21:17:00.000-07:00

The rocking chair at Grandma and Grandpa's house was a big hit (there are pictures somewhere of mommy rocking in this same chair around the same age as Evan).

We had the Easter Egg hunt inside at our house. Daddy carried Evan around to the first 5 eggs...then we called it a day.

Daddy thought maybe Evan would like putting the eggs into the basket--not so much :)

Doing Much Better

2009-04-14T00:01:00.001-07:00

Lots of people have asked...Evan is feeling much better. He is still not 100%, but is up walking around and getting into trouble. I have some pictures from Easter, but am too tired to upload them tonight :)

Still sick...

2009-04-09T21:35:00.000-07:00

This is a rather popular post title in our circle. And it fits here too--Evan still is pretty sick. Another day spent sacked out on the couch in PJs. He won't be going to preschool again tomorrow, making it an even week he's missed. He has a barky little cough, green snot, a fever (waxing and waning now) and diarrhea. Fortunately, he does not have junky lungs or bad oxygen sats.

It was really nice out this evening, so we bundled Evan up and loaded him in his stroller. We thought some fresh air might lift his spirits...and it did for the first half of the walk. All of a sudden he got really upset, but he didn't yell or make any noise. The tears started flowing, his lower lip quivered, and he started wringing his hands--it was very sad to see. We pushed him back home at a pretty brisk pace, feeling like awful parents for coming up with such a dumb idea in the first place.

Pookie is sick

2009-04-07T21:33:00.001-07:00

I am really not shocked that Evan is sick now too (it seems like everyone we know is sick right now...). Evan is not a boy to lounge around--or even really sit still for longer than two seconds at a time. So I know he is not feeling good when I come home to this sight:

Sick or not, you are just too cute!

Swingin'

2009-04-07T21:24:00.001-07:00

Evan loves his swing. Daddy just got it out for the season, and Evan will swing happily for quite a while on his own. A push from one of us is just icing on the cake. I have some pictures from this past Sunday.

Evan was not interested in a photo-op...he just wanted to swing. And a chin pinch for anyone getting between him and a big push (those really hurt, btw).

Although it looks like Auntie Jen is getting ready to launch Evan sling-shot-style, this is just the kind of pushing he loves...

Taste of Spring

2009-04-04T22:18:00.000-07:00

This afternoon was absolutely beautiful. I got home from work at 3:30, and the three of us stayed out in the front yard all afternoon. Jeremy hung Evan's swing up in our front doorway, and he kept himself occupied with swinging while Jer and I did some yard work. We gathered up a lot of dead vegetation, and together trimmed up a pretty out of control wild rose bush. This particular rose is special to us because it was growing wild right next to the garage foundation when we bought our house. It's huge now, and has taken over the trellis we put up for it.

I have so missed the feeling of sun on my skin. It was warm enough to work in a t-shirt, and after we were done I fell asleep in a chair on our front porch. Heaven :) I hope this weather is here to stay (we've had snow in the past week, so who can say).

20 Hour Benefit Crop

2009-03-29T18:31:00.000-07:00

We are asking all of our frinds and family to please help our family raise money for the Uncompensated Care Fund at Seattle Children’s Hospital.

Seattle Children's serves families in four states—Washington, Idaho, Montana, and Alaska. The uncompensated care fund at Seattle Children’s is supported in part by the largest guild association of any hospital in the nation. The uncompensated care fund insures that no child goes with out care simply because a family can't afford it. In 2008, $86.2 million in uncompensated care was provided—double 2006 amounts. In 2009, it is projected to increase to over $100 million.

Evan has spent some time at Children’s Hospital—-seven weeks shortly after birth, and he has periodically returned because of illness or for surgical procedures. Our family has received financial assistance through this uncompensated care fund. Mostly it has helped with Evan's home medical supplies, which we have exceeded our insurance’s $5,000 yearly maximum every single year. But financial assistance also helps us with co-payments, co-insurance, and things our insurance does not cover (Evan's hearing aids are a big example). Seattle Children's is an incredible hospital, and they have taken care of our family in many ways. While we are not able to return the favor dollar-for-dollar, we still want to give back.

So how can you help? Please sponsor me! On April 17th, I will be participating in a 20-hour benefit crop (scrapbook lingo for a time and place to sit down, spread out your stuff, and put together some pages!). This benefit is in it's 6th year, and is organized by my favorite scrapbook supply store of all time, Treasury of Memories. For more information about the event itself, go to

http://treasuryofmemories.typepad.com/my_weblog/2009/02/ready-to-have-a-ton-of-fun-and-help-children.html

I have set a personal fundraising goal of $2000. I know times are tight, but every little bit helps and no donation is too small. Checks can be made out to “The Mighty Maxwell Guild.” (Please leave a comment if you don't have my address, and I'll be sure to get it to you)

Thank you in advance for your generous support!

Storrs Family

March for Babies

2009-03-29T18:18:00.000-07:00

March for Babies 2009 will be held on April 25th at Sarge Hubbard Park in Yakima.

This year, Evan's CHARGErs will be walking in honor of Levi and Judah Nelson, who were born on March 14, 2009, at 33 weeks gestation. Both boys are healthy and strong and now are learning to eat and starting to gain weight! Levi weighed 4 lbs 11 oz and Judah weighed 4 lbs 6 oz at birth...both a good size for identical twins. These new Nelson boys join big brother Burke, ex-31 weeker, and a friend of ours who happens to also have CHARGE Syndrome.

I have added a link to the blog sidebar. Donations to the March of Dimes in honor of Levi and Judah are welcome (please do not feel like you need to donate to both the Crop for Kids and March for Babies). Walkers joining our team on walk day are welcome also.

Bubbles

2009-03-22T15:36:00.002-07:00

Evan and I had some fun earlier this afternoon blowing bubbles. If I had any doubts about his vision, they disappeared today...along with those fleeting little bubbles.

I was blowing the bubbles up in the air, so they would stay lofted up long enough for me to grab the camera and take pictures with Evan still looking upwards. He would find a bubble and watch it drift down to his level, and then he would reach out and pop it. These bubbles were a "long lasting" formulation, and if a bubble happened to stay air born long enough, when it popped it would leave a little white wisp of dried soap film (it looked like a piece of cobweb). I saw Evan focused in on one of these "old" bubbles, and when it popped I watched him follow the little cobweb down to the ground. Those were hard to see, and he definitely saw it!

Busy + Tired = No Posts

2009-03-22T15:36:00.001-07:00

I have not kept Evan's blog updated the way I would like. We have a lot going on right now (ASL Class, daddy's doing some jobs on the weekends and evenings, mommy is trying to hire some new staff at work).

Evan is doing great. He is on spring break this week. We just received his most recent progress report from school--he's accomplished a few of his goals and is making progress on many more of them. We still do not have a signing aid for him yet, but his "substitute" aid has been with him for two months now and just loves him. We are about ready to make the suggestion that the school should invest in ASL classes for her, because Evan really likes her also.

Evan's newest sign of affection is the chin pinch. We think maybe it started because of daddy's beard??? Regardless of it's origins, Evan will reach up and grab your chin and either try to push on it or pinch you--hard, with fingernails. If you make a face and say/sign "No, that hurts" he laughs and tries to do it again. Avoidance seems to be the best way to deal with it. Not reacting is also an option, but it's really hard when the pinch is bringing tears to your eyes. I say this is his way of expressing affection because he only does it to people he knows really well and likes.

Evan's appropriate use of shaking his head for "NO" is rapidly improving. Pretty much any request is met with a vigorous round of shaking no. PJ time Evan! (Shake, shake, shake) Let's change your diaper! (Shake, shake, shake) Time for milk! (Shake, shake, shake) Pretty typical behavior for a 3 year old.

Evan continues to express himself primarily by leading behavior or by different non-verbal vocalizations. It is very apparent if he does or doesn't like/want to do something. He likes to wear blue jeans and will help you put these on by stepping into the legs if he's standing up or pushing his bottom up off the ground so we can slide the pants on (other colored pants, sweats, and PJ bottoms he fights by kicking his legs or taking them off after you've put them on). He does not like sweatshirts or button-up shirts. He likes long-sleeved t-shirts and has a favorite red shirt he always wants to wear. If you take his shirt off, and don't have another to put right back on he will go find one for you. Sometimes it is actually one of his shirts, but more often than not it's one of mom or dad's from the clean clothes "pile" in our room--there is usually a 1-2 day "layover" for clean laundry, from the dryer to being folded and put away.

Evan's Art

2009-03-15T14:36:00.000-07:00

This is the "Blarney Stone" Evan made at Preschool (I think he had some help).

Evan made this picture all by himself. I think he has a really good sense of design. I love how he balanced the strong horizontal lines with the dots and rounder edges, and how each color has it's own presence on the page. It's a keeper.

This was a collabortive effort. I made the shamrocks with three dots, thinking he would add the "stems" with his fingers. Not quite...

Obviously another one we worked on together. Evan stuck most of the "snow flakes" onto the paper (I crumpled them up and helped him with the glue stick). Considering our first attempt with the tissue paper he picked every piece I glued down off the paper, I thought this was pretty decent progress. And yes, it was snowing here this morning.

Evan and the Mini-pack

2009-03-01T19:04:00.001-08:00

February Feeding Landmarks

2009-03-01T18:09:00.000-08:00

Last week, I made a batch of blendarized food with the very last Flintstone from Evan's first BIG bottle of vitamins. There were 150 vitamins in the bottle, and every batch of food I make for him contains one vitamin. This means I have blended him approximately 180 liters (or 47 1/2 gallons if you don't think metric) so far.

We started the blendarized diet with Evan in July 2007, and once we got going have never looked back. I think it's one of the best decisions for him we've ever made. Evan is down to 1 can of Pediasure per day, which he takes with the feeding pump over night. During the day he takes approximately 600 mL of blended food mixed with 8 oz of whole milk. While combinations like "spinach-apple-acorn squash" or "vanilla bean" (green bean-pea-sweet potato mixed with vanilla flavored rice milk because the store was out of plain) don't really do much for my palate, Evan has done really well with them. And we do feed him tasty blends as well..."strawberry-peach-banana" is one of my personal favorites.

Our other milestone for the month was Evan's feeding pump biting the dust. The Kangaroo Pet pump has been with us since Evan came home from the hospital. I was trying to calculate how much that little pump pumped while we had it (we started out renting it from Keeler's medical supply, so it wasn't brand new). It's not the easiest math because the total volume per day has changed as Evan's gotten older (and as he's been able to take the bulk of his volume during the day). I would estimate the average volume that pump has delivered per day would be about 500 ml, times 3.5 years is approximately 640 L (169 gallons)!

The Kangaroo Pet is no longer made, so Evan's new pump is a Zevex Infinity. Of course the new pump uses totally different bags (if anyone wants any of the Pet pump bags, we have about 30 we can't return). It's a much quieter pump. It's smaller and sleeker. It doesn't have to be hung upright, so we were able to take the IV stand out of Evan's room. And the new pump came with an absolutely adorable tiny backpack that Evan will actually wear (pictures to follow--it's really cute).

Walking Aid

2009-02-26T19:19:00.001-08:00

Evan usually doesn't care to wear his hearing aid. He humors us when he's at school, and he might leave it in for a few minutes at home...otherwise, he wants that aid out of his ear! There is one exception to this rule.

Even though Evan can walk pretty well all on his own, he still loves to "finger walk" around the kitchen table with daddy. I think it must help ground him, or provide some sort of organizational input that he just doesn't get any other way. He loves it, and every day Jeremy and Evan make umpteen laps around the table. Evan is also very particular about the chairs being pushed all the way in--whether someone is sitting there or not.

Jeremy realized that during the walking was a great time for Evan to wear his hearing aid. His hands are busy, so he can't pull it right out. Evan has made this connection, and now instead of just pulling on daddy's hands to go walking he will actually go find his hearing aid and bring it to Jeremy. It's the cutest thing, and it's so exciting to us that he has made that connection.

Even neater still, Jeremy actually saw Evan getting his hearing aid earlier today. The hearing aid was on the floor in the middle of the hall. Evan walked down the hall, saw the aid, bent over at the waist, picked it up with a pincher grasp, straightened back up without wobbling (or using anything for support), turned around, and came back to daddy.

And he has figured out that with this trick, Jeremy will reward him with even more walking around the table. We were trying to eat dinner tonight, and Evan came over and tried to give Jeremy his hearing aid. All he got that time was the "wait" sign--not at all happy about that!

One Dedicated Tooth Lady!

2009-02-24T19:58:00.000-08:00

Evidently keeping one blog up to date is just not enough for me. I also started a blog for the Ellensburg Lions Club a few months back (and I am co-author for the brand new Kittitas County Parent to Parent blog--it's not much to look at just yet).

So this is the one time I'm going to shamelessly promote the Lions Club Blog on Evan's Blog. It's called Tales from the Den (lions, tails, dens...clever, eh? www.ellensburglions.blogspot.com).

We had a speaker today, Christie W., who came to talk to our club about dental access in our county. I wanted to take a minute to talk about Christie, because her level of dedication is pretty amazing. One would not be out of line in nominating her for the Lemonade Award.

I will let you meander over to the other blog to read more about Christie's story. You can copy the link into your browser, or if you click on "My Complete Profile" (it's at the bottom of the sidebar on the right) it will list the other blog(s).

The Lemonade Award

2009-02-22T11:31:00.000-08:00

Jess, who is Connor's mom and the author of Connor's Song (http://connorssong.blogspot.com/) just gave me the Lemonade Award--for maintaining a positive, upbeat attitude in the face of challenges, as in "when life gives you lemons, you make..."

I'm not sure if an acceptance speech is really warranted here, but... Jeremy is at least as deserving (if not more so) of the Lemonade Award as I am. In real life, my first reaction to things not going as I have planned is to get upset and be grouchy, until I have time to process it and sort out my feelings. Jeremy is always right there with me. He is the one that takes my initial reaction--all the while having to deal with his own--and we talk about it, and in the talking figure out what we have to do to get through the situation. I've come to realize when the two of us stick together, we can handle a lot. Maybe even a game of dodge ball played with lemons.

So who are my Lemonade recipients?

• Amy M., mom to Mighty Max
• Amy R., mom to Ben
• Rebecca A., mom to Nathan and Cameron
• Sarah H., mom to Caleb
• Catherine D., mom to Reuben and Callum
• Liz M., mom to Kaitlyn, Quinn, and Angel Corinne
• Lesley C., mom to Gabrielle, Olivia, Fleur, and Amelie
• Crystal M., mom to Alex, Bailey, and Eva
• Kim C., mom to Jonathan, Tyler, Cameron, and Christopher
• Kristi S., mom to Gracie and Preston
• Leslie K., mom to Katie
• Lisa W., mom to Kennedy (+ two older brothers), and Grandma to Taylor
• Shelly S., mom to Luke (+ three siblings)
• Marty K., mom to Maya, Addy, and Teya
• Corrie Y., mom to Peyton, Cy, Mary Catherine, and Tate
• Kristi G., mom to Dylan and Jonah
• Julie C., mom to Gabe and Kaia
• Chris N., mom to Burke (+ two more boys on the way!)
• Jennifer M., mom to Dylan and Angel Cedie

It's quite a long list...it's all the moms I can think of who I know are dealing with difficult circumstances every day. And while not every word that comes out of their mouths or is typed on their blogs is a ray of sunshine, they are being honest and real. Most importantly, they are making it work. I have learned something from each and every one of you--thank you for sharing :)

He's a Candidate

2009-02-20T21:02:00.000-08:00

Dr. Sie thinks Evan is a good candidate for a cochlear implant! Jeremy and I are still in a little bit of shock--both of us thought for one reason or another, he would not be a candidate. The decision would have been made for us, and we would move on.

Evan's degree of hearing loss (severe on one side and severe to profound on the other) qualifies him for a CI. Dr. Sie reviewed Evan's MRI from December with us. Evan's cochleas are missing a turn on each side, but the portion that is missing doesn't contribute much to hearing sound. She confirmed he does have the hearing nerve on each side, and the facial nerve is where it's supposed to be to the point it exits the skull. In looking at the vestibular system (provides sense of balance), he only has one set of semi-circular canals and a tiny bud of a second set. Normally, three are present on each side and we had been told before he had two sets. All the more amazing he can walk now.

Dr. Sie told us even with a CI Evan would still almost certainly be non-verbal (we already knew this), but that it would be realistic to expect with the implant he could hear sound in the range of speech as well as enviornmental sounds. She stressed the importance of continuing with ASL, as this would be his primary expressive language.

Because Evan has tubes in his ears, he would be at increased risk for serious infections like menigitis. Also, there was a chance that the surgery could lead to increased facial weakness (from damaging the facial nerve during surgery). Dr. Sie felt both these risks were small in comparison to the potential benefit of the CI for Evan.

Jeremy and I have a lot to think about now--we have to make the decision.

Pictures from Today

2009-02-20T20:39:00.000-08:00

Evan knew just what daddy's sunglasses were for. He insisted on wearing them upside down though--I tried to show him the "right" way, but he would just flip them over again. I think it might have had something to do with the temple ear bend being at an ideal chewing angle when the glasses were upside down.

This was a big deal--Evan walking into Children's. We have always pushed him in by stroller. He lasted through the first short appointment, and then Jeremy had to run back to the car to get the stroller. Not so much because Evan was tired of walking, but we needed him to stay with us while we ate lunch.

Waiting in the exam room for Dr. Sie. There was plenty of time for snuggles.

We stopped at the playground at University Village. Evan wasn't interested in playing, but he did want to walk around. The cute stick-figure face is from a store window.

Today in Seattle, it felt (and looked) like spring has already sprung...the flowers at the mall were so pretty.

Appointment with the Surgeon

2009-02-19T21:55:00.000-08:00

Tomorrow is a big day for the Storrs Family. We have an appointment with Dr. Sie at Children's. She is the surgeon who would do Evan's cochlear implant surgery. This is the last appointment to determine if Evan is in fact a candidate for the procedure. We will review the results of the BAER, the CT, and MRI done in December.

I really don't know which way it's going to go. We do know that Evan showed some increased response on this most recent BAER with bone conduction, which is contradictory to all his previous tests. I'm curious if this could be another "summation" problem--there was one other time we were told Evan's hearing was better with bone conduction, and it turned out to be an artifact (the summation). Possibly, we could be told to try the bone conduction hearing aid with Evan again. We briefly tried one about a year ago, and it did not seem to help.

CHARGE is known for causing nerves to grow in atypical patterns. The MRI is to help the surgeon visualize where the facial nerve is, because if it gets damaged during the CI surgery that can cause a total facial palsy on one side. Jeremy and I have already talked and agree that if there is any uncertainty about the path of Evan's facial nerve, we don't want to chance it.

If Evan is not a candidate, then this will give us--or maybe just me--some closure. We will know we looked into the CI and will move on with ASL and Total Communication. In a way, I think it will renew my committment to learn more sign. I feel like I've been stuck in a holding pattern, waiting to find out if we can go down the CI road. It really shouldn't be that way--having a CI does not change the fact that Evan will always be Deaf, and I still need to know ASL. I should not be using the CI as an excuse...but I find myself doing just that.

If Evan is a candidate...that will be a new adventure, full of new doctors and new therapy.

I think I am at a point where I can be OK/not disappointed if it's a no. Things happen the way they do for a reason.

Fingerpaint Artist

2009-02-15T14:13:00.002-08:00

Kiss Kiss

2009-02-14T21:06:00.001-08:00

I would not consider Jeremy and I to be huge PDAers (as in "Public Display of Affection"), but we do kiss each other every day at home. Neither of us thought much about our little audience.

Evan has been all about kissing mommy or daddy lately--his version of a "kiss" is to push his forehead into your chin and rub his head from side to side. Yesterday, the three of us were sitting on the floor together. Evan pushed our heads together (it was more like mashing us together--he's not very gentle) and started giggling when we kissed. He did it several times.

We tried to get him to do it this evening, so Grandma could catch it on film, but no suck luck. The best we got was an "Evan Sandwich"--still pretty darn cute.

Moles

2009-02-14T20:58:00.000-08:00

I have on occasion wondered about the evolution of a mole. Babies usually don't have any (birth marks, yes--but not actual moles). And pretty much every adult has at least a few. When do we get them? Surely they just don't appear over night.
I think I have an answer now, as far as when they first show up--age 3 1/2. As I was putting Evan's pajamas on, I noticed the tiniest mole under his left armpit. I asked Jeremy if he'd seen it, and he had not seen that one but had recently noticed one on the side of Evan's neck. Another first for the baby book :)

Enough about the "Octuplets Mom" already...

2009-02-12T20:25:00.000-08:00

After over a week of reading almost exclusively negative media coverage, blog posts, and blog post comments about the mom of the octuplets born last month, I feel compelled to come to her defense. No one else is!

Let me preface this post by saying I truly believe it isn't fair to judge someone else unless you have "walked a mile" in their shoes. Least I be accused of hypocrisy, I'll be the first to admit I am guilty of writing judgmental posts (a post I wrote a couple years ago about Brittney Spears comes to mind...). I am not saying I haven't done it, just that I don't think its right.

Most of what we know of this woman and her family is courtesy of the media. In my experience, the media does not have the best track record for providing bias-free or even accurate information.

Do I agree with the choices this mother made, in terms of the size of her family? Of course not--I think she should have stopped about 10 kids ago.

Do I think the doctor who did the IVF procedure used his best professional judgment when he transferred 6 embryos, regardless of the number of previous children? After listening to some "expert" doctors on the news, evidently not. Other reports suggest--standard of care or not--the octuplets mom is hardly the first woman to have large numbers of transferred embryos "take" and result in high-order multiples.

Am I thrilled by the prospect of my tax dollars going towards the SSI at least some of these children will be on? That would be a "no" also. The bottom line is no one can afford the hospital bills for one of these children, let alone multiples.

The last time I checked, Evan was up to almost 1 million on his 2 million lifetime maximum with our individual insurance policy. Compared to some other children I know of who were preterm or have/had multiple congenital health issues, Evan was a bargain. I may justify to myself that we not being a drain on society because we had our own insurance policy, but what does that really mean? Essentially, the total bill was contractually reduced and remainder spread out over the subset of the population who happened to be other subscribers. We paid our premiums and deductibles, but what we got in return was much, much greater than what we have ever (or will ever) pay in. I may gripe about our insurance company sometimes (ok, quite frequently), but I do appreciate this fact. And for awhile Evan also had a secondary medical coupon (i.e. we didn't have to pay our deductible or coinsurance) and we are still receiving "financial aid" from Children's Hospital. I guess what I'm getting at here is that I don't think it's fair for me to criticize the octuplets mom for needing assistance/state insurance for some of her 14 children, when by myself I couldn't have even paid for my one.

I stayed up to watch the interview with this mother on Dateline the other night, and I was struck by her extreme naivety, in terms of the financial and social ramifications of her actions. She has been living off of student loans and food stamps! And she thinks consolidating her student loans is going to help!

I will repeat that I don't think she used the best (or even good) judgment when she decided to go for that last baby. But what's done is done. Bashing her doesn't turn back time, it doesn't negate that fact that there are 8 preterm babies, plus 6 older ones at home. Can she raise all these children without state assistance or having a nervous breakdown? Highly unlikely. But if we want to make sure that she can't do it--guarantee she will fail--then keep the pressure on her with media scrutiny. Make her feel the "love" by blasting her with constant negativity and threats. That's going to make a bad situation better???

If we weren't in a major financial crisis, this wouldn't have even attracted attention for more than a day. People would be like "Octuplets? Didn't someone give birth to nanuplets last year?" I'm not trying to make light of the serious nature of preterm and/or multiple births. But these babies--this family--in better times would not so much as raised the public eyebrow.

I think what upsets me the most about this whole situation is the mothers who I feel should be the most likely to have even the tiniest bit of compassion for this woman...they just don't. I find that really disappointing. And just plain sad.

Kids Castle--Here we Come!

2009-02-08T18:48:00.000-08:00

Evan went pee in his potty chair 3 times this morning, to bring the total up to (drum roll please...) 25! So as promised on his "Potty Chart," we took him to play at Kids Castle. We took the chart with us, to help him make the connection between bathroom performance and the reward. Not so sure he understands how they are related, but he had fun anyway!

All About Your Firstborn

2009-02-08T18:41:00.000-08:00

I had seen this survey going around on Facebook the past coulple of weeks. After reading about 10 of what I would consider pretty “vanilla” stories (apologies in advance--I know every mom's birth story is exciting and unique to them), I really debated posting my results this survey. I didn't have a typical birth experience. But I decided in the end that wanted to share, to show that even though things don't turn out the way we would have planned or hoped, they can still be OK. Evan is pretty impressive evidence of that.

Survey says…

1. WAS YOUR PREGNANCY PLANNED?
Sort of…one month of not not trying

2. WERE YOU MARRIED AT THE TIME?
Yes

3. WHAT WERE YOUR REACTIONS?
Disbelief at first. Most of my friends and/or family took several months of active trying to get pregnant.

4. WAS ABORTION AN OPTION FOR YOU?
No

5. HOW OLD WERE YOU
28

6. HOW DID YOU FIND OUT YOU WERE PREGNANT?
Two home tests (plus one Jeremy took as a “control” because the results I was getting did not look like either “+” or “-“ on the back of the box—thankfully, he was not pregnant…).

7. WHO DID YOU TELL FIRST?
Our parents

8. DID YOU WANT TO FIND OUT THE SEX?
Yes

9. DUE DATE?
September 11, 2005

10. DID YOU HAVE MORNING SICKNESS?
More afternoon/evening sickness

11. WHAT DID YOU CRAVE?
Subway and tacos

12.WHAT IRRITATED YOU?
After Evan was born, women who complained about being pregnant for “so long” and wanting their pregnancy to be over.

13. WHAT WAS YOUR FIRST CHILD'S SEX?
Boy

14. DID YOU WISH YOU HAD THE OPPOSITE SEX OF WHAT YOU WERE GETTING?
At first I wanted a girl, but early on I just knew we were having a boy.

15. HOW MANY POUNDS DID YOU GAIN THROUGHOUT THE PREGNANCY
At one point 58 lbs., and then lost 10 lbs the week before Evan was born.

16. DID YOU HAVE A BABY SHOWER?
One was planned for the last week of July, but I postponed and later cancelled it.

17. WAS IT A SURPRISE OR DID YOU KNOW?
I knew—I made the invitations!

18. DID YOU HAVE ANY COMPLICATIONS DURING YOUR PREGNANCY?
Just a few…
- A false positive for toxoplasmosis at 10 weeks—bad reagent at the lab, I was told. I declined all the optional tests (including the quad screen) from then on.
- Polyhydramnios, which is too much amniotic fluid—who knew the amount of fluid the fetus is supposed to be drinking would throw things so off balance?
- Really bad peripheral pitting edema
- Pregnancy Induced Hypertension
- Suspicions our baby had some type of syndrome, based on polyhydramnios and U/S findings at 30 weeks. I will never forget the silence in the room during our last 2 U/S—it spoke volumes.
- Preterm birth at 31 weeks and 5 days
- Evan was diagnosed by the NICU doctors with CHARGE Syndrome at 10 days old. He spent a total of 7 weeks in the NICU and 7 weeks on “the floor” in two different hospitals and had to have major abdominal surgery (3 combined procedures) before finally being able to come home with us.
- D&C 2 weeks after birth to remove “retained products of conception” (left over piece of plancenta).

19. WHERE DID YOU GIVE BIRTH?
Swedish Medical Center, Seattle, WA

20. WHO DROVE YOU TO THE HOSPITAL?
Jeremy drove me to Kittitas Valley Community Hospital the morning my water broke at 7 am. I was too early to deliver there, so I was transferred by ambulance to Swedish at 9 am. I was given meds to slow labor, and the plan was to be admitted to the antipartum unit at Swedish, and try to buy some time with total bed-rest. I happened to know the EMT who rode in the back of the ambulance with me—I jokingly asked him how many babies he’d delivered. He said “None—and we’re going to keep it that way.” Evan had other plans—he was born 2 hours after we were admitted to Swedish.

21. WHO WATCHED YOU GIVE BIRTH?
Jeremy, the attending OB, 2 residents, the Labor & Delivery nurse, the anesthesiologist made a brief appearance, and the NICU team (I think there were 4 of them—the neonatologist, 2 NICU nurses, and a respiratory therapist).

22. WAS IT NATURAL OR C-SECTION?
Natural, but vacuum assited

23. DID YOU TAKE MEDICINE TO EASE THE PAIN?
No. By the time the doctor’s realized how far into labor I was, there wasn’t enough time for an epidural. Then Evan went in to fetal distress, and they had to get him out. The OB resident was nice enough to tell me they’d put “something” in my IV—thankfully the placebo effect is pretty powerful.

24. HOW MANY HOURS WERE YOU IN LABOR?
6 1/2

25. HOW MUCH DID THE BABY WEIGH?
3 lbs 1 oz

26. WHEN WAS YOUR CHILD ACTUALLY BORN
July 15, 2005 at 1:38pm

27. WHAT DID YOU NAME HIM/HER?
Evan David Storrs

Our family was blessed with a happy ending—Evan is the most beautiful, active 3 ½ year old little boy, and does something to amaze us every single day. He will always have challenges due to CHARGE syndrome (he is Deaf and has some developmental delays). His early arrival did not do him any favors, but he managed to avoid some of the many problems associated with premature birth. Not all babies are so lucky.

More Adventures in Potty Training

2009-02-04T21:15:00.000-08:00

OK--I freely admit I'm a little "stuck" on this topic. But I'm absolutely amazed Evan's progress. He really seems to "get" the concept of peeing in the potty chair. Evan has 12 stars on his chart now, and we started the chart about a week ago! He knows when we go in the bathroom what I want him to do--and he usually does now. Sometimes mommy isn't quick enough with getting the diaper off, but I'm not complaining. Keep up the great work Evan--we'll be going to Kid's Castle in no time (that's the reward for getting 25 stars)!

"I'm telling God on you!"

2009-01-30T21:10:00.000-08:00

I went to a nursing home today to see one of my patients for an eye infection. I really do not like going to the nursing home. Today, I liked it even less than usual.

As I came in the room, the nurse had just moved this patient out of bed and into a wheelchair to go to physical therapy. She did not want to go to PT. The patient kept asking me to tell the nurses she needed to be in bed to for me to examine her, and she was in a lot of pain in the wheelchair. I kept trying to tell her by the time the nurses came and moved her, I would be done checking her eyes. This was not what she wanted to hear.

At one point, she told me she was going to be sick and I should bring over her plastic tub (the mauve hospital ones we are all too familiar with...). She grabbed it and started banging it on the foot-board of her bed. Shortly after that, I saw a note taped to her bed-table that said "Please use the call button to ask for the nurse, do not bang things to get our attention..." Ooops.

It didn't take me more than 5 minutes to do the whole exam (including checking vision--me: Have you noticed any changes in your vision? her: Well, I can't see sh**. OK then.). Unfortunately, it took me about 10 minutes to write out my exam note and orders for her chart. I pushed the call button for the nurse to come take her to therapy before I even started writing. The whole time she is asking me to take my time and to tell the nurses I need her back in bed. At first, she alternated between pleading with me and banging that stupid tub against the bed. But pretty quickly her tone changed and she started getting mean. The last thing she said before the nurses aide wheeled her away--I swear it was an eternity if it was 10 minutes--was "When I die, I'm telling God on you!"

Aides & Potty Talk

2009-01-30T20:58:00.000-08:00

Evan is between aides at school again. The aide I had posted about last week (who has 8 years experience as an interpreter) did not end up taking the job. Evan has a "substitute" aide at the moment--she doesn't know ASL, but from what we have heard from the teachers, she is very good about keeping Evan involved with what the rest of the class is doing. Hopefully we will find a new aide who does know sign soon.

Next month Evan is also going to start Total Communication classes back up with Kat, his teacher of the Deaf from Hearing and Speech in Yakima. Jeremy and I both feel this is the best use of Evan's 20 therapy visits our insurance pays each year. Kat has also offered to come observe at Evan's preschool. We are excited to get back with her!

Potty training has been going better than I would have expected. I made a progress chart to post in the bathroom, next to Evan's potty chair. Every time he goes in the potty (or at least partly in the potty), he gets a star on his chart. In the past week, he has earned 9 stars! I don't know if he's made the connection yet, but he does like to touch the stars (and try to pick them off the chart). One day Evan appeared to be trying to tell Jeremy (by body language) he needed to go. Jeremy was changing him, and he wouldn't let him put the new diaper on. Jeremy took him to the potty, he went right away, and then put the diaper on no problem. I've also noticed diapers are staying dry between most changings during the day. Both of those things are signs of potty training readiness, so it's got to be a good sign.

Yakima Valley School

2009-01-27T14:37:00.000-08:00

In the special-needs community, schools like this one can be very polarizing. Many disability-rights advocates oppose placement in "institutions." But for some families, this really is the best option for a special-needs child once they reach adulthood. It's an option I don't think should be taken away from families. I hope the Governor reconsiders her stance on this one--there are surely other areas where spending could be trimmed and save the school.

State Democrats trying to keep Yakima Valley School open
by Mark Morey
Yakima Herald-Republic – 1/25/2009

Gov. Chris Gregoire's own party is telling her she's got a bad idea when it comes to the Yakima Valley School.
The state Democratic Party's Central Committee, which oversees the organization's state-level business and legislative priorities, unanimously passed a resolution Saturday opposing closure of the Selah-based institution for the developmentally disabled.
Gregoire last month suggested the cut as one of many across state government to balance the state budget. Washington's deficit could reach an estimated
$6 billion over the next three years.
Although the resolution is symbolic, it sends a signal to the governor's office that neither the Democrats nor the Republicans would look kindly on closure of the school, which serves 88 of the state's most profoundly disabled residents.
The state GOP's central committee, which also met this weekend, did not consider a similar resolution, but Central Washington's all-Republican delegation has already voiced strong opposition to the proposal.
Mary Stephenson, chairwoman for the Yakima County Democrats, said it was rare for the central committee to consider such a resolution on a budget issue.
Stephenson, who announced the resolution's passage on Sunday, said she hopes the Legislature will listen to the pleas from leaders of both parties.
"We're just trying to use all the political power we can to keep (the school) in the budget," Stephenson said.
A Gregoire spokesman did not return a phone message seeking reaction to the resolution.
Freshman Rep. Norm Johnson, R-Yakima, serves on his chamber's Health and Human Services Appropriations Committee, which is expected to be involved in budget talks that would consider the fate of the Yakima Valley School.
"Oh, great," he said when told Sunday about the Democratic resolution.
Gregoire's proposal for the school would move the residents into community settings such as group homes or apartments by 2011.
Her figures suggest the move would save the state nearly $18 million a year.
A community bed costs about $126,000, according to a recent report to the Legislature, while care per patient totals nearly $173,000 at the school.
But critics of the possible closure say the residents need the intense care provided at the school. They say the projected savings would be marginal, especially once the state subsidizes relocation.
Community-living advocates counter that they can provide quality care for less money, in part because of lower wages for their employees.

* Mark Morey can be reached at 577-7671 or mmorey@yakimaherald.com.

State Democratic Party denounces proposed closure of Yakima Valley School

Yakima Herald-Republic – 1/26/2009

The state Democratic Party's central commitee has come out in opposition of the proposed closure of the Yakima Valley School, the Selah-based state care facility for the developmentally disabled.
The resolution, one of only five considered at the annual meeting Saturday in Olympia, passed unanimously after being drafted by the state committee's disabilities issues caucus, said Mary Stephenson, chairwoman of the Yakima County Democratic Party.
Democratic Gov. Chris Gregoire has proposed closing the 61-year-old school by 2011 to help balance the state budget.
Central Washington's lawmakers, all Republicans, declared their opposition to the move in a news conference at the school last month.
Gregoire's proposal would move the school's 88 residents into home-based care facilities in the community, which she says would save money because employees are paid less.
Critics say the savings would be minimal and that the severity of the patients' needs requires the intense support available at the specialized school.
Stephenson said she expects the county central committee to consider a similar resolution opposing closure when the panel meets Monday evening.
The state-level resolution passed Saturday is symbolic -- legislators and the governor have final say on the budget -- but Stephenson said she hopes that it will send a signal to Olympia to keep the school open.
Democrats hold the majority in both the state House and Senate.

Well, what do we have here?

2009-01-22T21:17:00.000-08:00

Two of my favorite things...

Daddy and a light!

Reading daddy's mind: please don't let go now, please don't let go now...

Wintry Shots

2009-01-22T21:10:00.000-08:00

I took these pictures last weekend at the rest-stop on Selah ridge. I was impressed by the size of the ice crystals. We've had a couple relatively warmer days this past week, so they are probably gone now.

Potty Chair Three-peat

2009-01-18T08:55:00.000-08:00

Yesterday afternoon, I watched Evan maneuver his closed potty-chair over to the bathroom sink, then climb up on top of it so he could turn the faucet on and off to play in the water. I thought to myself, "If he can understand the sequencing of individual events needed to play in the sink, he should be able to understand the concept of what the potty-chair is really for"--it isn't rocket science!

So I pushed the potty to it's regular place, flipped up the lid, and stripped him from the waist down. His diaper was not dry, so I didn't have high hopes but we stood in front of the potty and I signed "potty" like crazy. He kept trying to put a foot up on the seat to climb and I kept putting it back down and signing "potty". After a minute or so of standing there, he managed to squeeze out a couple of drops and one landed in the potty. I signed "potty, yes" and the sign for clapping--Evan smiled. I went and put on a pair of his training underwear and we played in the bedroom for about 10 minutes. When I saw him start to go, I stripped him again and we ran to the potty. This time some more made it into the potty (although most of it did not :). More "potty-yeah!". I put him back in a diaper and pants and let him go about his business of playing.

Last night, I wanted to he if the afternoon sucess was just a fluke. So we took off his diaper and stood in front of the potty chair. More signing "potty", more Evan trying to climb up on top of it. After a minute or two, he went again in the potty! Three times in one day!

Granted, he is not initiating any of this. Evan gives no indication before, during, or after he has wet or dirtied a diaper. But this does give me some hope that we may be able to habit train him (for peeing at least) during the day time. Maybe if he got used to the feeling of dry, he might be more annoyed by the feeling of wet and would start to let us know. We are in for a LONG journey with this, I know. But as my father recently brought to our attention, diapers are expensive (guess we're just so used to it that we don't think twice about dropping $40 for a box at Costco).

Great Day at Pre-School & Communication Update

2009-01-17T10:18:00.000-08:00

Thought I would share that according to his teachers, Evan had a fantastic day at pre-school on Friday!

Tuesday was Evan's first day with his new aide, Di. He missed Wednesday because Jeremy's truck died on the way into town (this is a whole other story--thankfully our neigbor Michelle was able to come to the rescue!). I guess Thursday was just a regular day. But Friday--Friday Evan had tons of eye contact, he gave a couple teachers hugs, and he made a very purposeful, finger-tips together "more" sign when Di signed if he wanted to keep riding in the wagon. Evan has seemed to understand the concept of "more" for awhile now, but he makes pretty much the same sign for "want" and "more"--a cross between hand flapping and clapping. I guess for a 3 year old, the shades of meaning are not that different. But this time, the sign actually looked like a real "more". Progress!

We have noticed at home Evan is making more of an effort to communicate with us. A lot of his communication is still pre-symbolic--most of it is pulling us towards what he wants, pushing our hand up against a doorknob or latch, putting a toy in our hand. I'm having second thoughts about getting him started with "floor spinning," because of how he asks for it--he will pull you to the kitchen, lay down, and then pull your hand between his legs (this is because I use his leg as a "handle" to get him going around, but I don't want him doing this with someone other than Jeremy or I!). I keep signing "round-and-round" when we do it, but so far no luck.

The eye contact is a constant--if he wants something (including attention), he will look right at us. We love this--it honestly seemed like forever that we were craning our heads around to get in his face so he would look at us. He also likes giving hugs and his version of a kiss: he will put his forhead up on your chin and shake his head back and forth (it's so cute!). He is very aware that daddy has a hairy chin and mommy does not.

Evan has for sure mastered the concept of "No"--he doesn't make the ASL sign yet, but if you sign something to him he's not wanting to do, he will shake his head back and forth. Do you want a bath Evan? (head shaking) Time to get dressed Evan? (more head shaking) Daddy is all finished walking? (lots of head shaking and some feet stomping)

Evan's New Aide

2009-01-13T22:49:00.000-08:00

Jeremy got to meet Evan's new signing aide this morning. Her name is Di, and she hasn't been officially hired yet but the school went ahead and had her start working with Evan. Di is fluent in ASL and has been an interpreter for 8 years. She has taught parents of Deaf children ASL and even offered to teach a private class for us and any other interested parents in the area. Jeremy and I feel incredibly blessed that in our small community, in less than 6 months, not just one--but two--very qualified people have answered the posting for this part-time, modest-pay job. After one class with Evan, Di told Jeremy she was hooked (but honestly, how could she not be?).

Back-and-forth-Cat

2009-01-12T19:38:00.001-08:00

Sorry that as of late this blog has been more about our cat than Evan! :)

So we learned a little bit more about Bosley's history... We took Bosley to our vet last Tuesday to get vaccinated and neutered--or at least half-neutered. Bosley only had one testicle also (I'm starting to wonder...is there something in the water around here???).

On Friday, we found out the "Bosley" is actually "Tiger" and belongs to our neighbors across the street. He had been an "inside" cat, which explained why we hadn't seen him before. The neighbors had been gone a lot, and they had a friend come and check on the cat--the friend let him out. Our neighbor had been asking around if anyone had seen her cat. I took Bosley back to her house, and explained what we had done (it is a pretty humbling experience to say "By the way, we altered your cat..."). She told me that she would rather the cat live with a nice family, and said we could have him.

So I brought him back home, but the next day Jeremy thought that we really should return "Tiger"--he felt badly we were taking the neighbor's cat. So Jeremy loaded "Tiger" up in our cat carrier and tried two times to take him back, but our neighbor didn't answer the door (she works odd hours and might have been sleeping). Tonight, he succeeded in catching the neighbor at home. He explained that we didn't want to take him from her, and that we didn't want her to worry about the vet bill. She took the cat, and we thought that was that.

About an hour later, she came and knocked on the door with (you guessed it) "Tiger/Bosley." Evidently, Bosley got used to his new digs and wasn't so happy about going back. He cried the whole time he was back home, and so the neighbor decided we should keep him.

So he's back...for good this time. Tiger Bosley (T-Boz for short). I hope he knows how many people want him.

Language popularity: It's a sign

2009-01-06T08:53:00.000-08:00

There was a great write-up about ASL classes at two high schools in Yakima (about 40 miles from us). I'm thinking of contacting these two teachers to see if they know of any recent graduates who might be interested in being Evan's Aide...

Language popularity: It's a sign
Signing classes prove popular as foreign language requirement
By JANE GARGAS
Yakima Herald-Republic

Silent yet boisterous.

Nonverbal but expressive.

American Sign Language classes at Eisenhower and Davis high schools are filling up so quickly these days that students can't sign up fast enough.

"It's exploded," says Bruce Mortimer, who directs technical and career education for Yakima schools.

The Eisenhower program started with nine students five years ago. Now, nearly 200 students crowd into six classes, beginning with a third-year group that meets at 6:30 a.m.

Even with that, there's no more room, so not everyone who wants to can take the sign-language classes.

"We have so much fun," reports Lori England, the Eisenhower teacher.

Similarly, Colleen Woodcock, who's been teaching at Davis for a year and a half, is building the program there, complete with already-bulging classes. Since more than 100 students have enrolled in her four classes, she'll be adding a fifth one next year.

"It's very visual," says Woodcock, noting that sign language classes appeal to a full spectrum of students, from the quiet to the dramatic and artistic.

Technically called Sign Interpretation class, it's offered in the career and technical department, designed to ready students for jobs as interpreters.

And there are plenty of jobs, according to Mortimer. "There's a pretty severe shortage both around the state and nationally of sign language interpreters," he explains.

That coincides with findings by a program supervisor who oversees ASL teachers and programs throughout Washington for the Office of the Superintendent of Public Instruction.

Citing information from the Bureau of Labor Statistics, Mary Nagel says the need for interpreters and translators is projected to increase 24 percent by 2016.

It isn't just the promise of jobs that lures students to the two sign language interpreter classes in Yakima. The program is also popular because it fulfills a foreign language or a technical credit, says Mortimer. But mostly it's because "we have two dynamite, phenomenal instructors."

Several other schools around the Valley offer instruction in ASL, either at the high school or middle school level.

Davis and Eisenhower emphasize learning the skill to use in the workplace.

One day a week in Woodcock's class, everyone wears earplugs, so the communication is entirely in sign.

"She's a really good teacher," says Kiabeth Ornelas, a freshman who describes class as "interactive and really, really fun." Ornelas is also spreading the wealth, having taught her 2-year-old nephew how to sign for "milk" and "please."

Bilingual in Spanish and English, Ornelas hopes to become a nurse and use sign to communicate with patients.

Describing herself as loud and unorthodox, England's exuberance often spreads out of the Eisenhower classroom and down the hall.

Using multiple resources, she admits she's not much of a by-the-book teacher and often gets inspiration on the spur of the moment. "I'll get a revelation in the shower and think, 'Oh my goodness, we're SO going to do that today.'"

Both teachers are largely self-taught. Always interested as a youngster in sign language ("I'd take a book in the library and sit there and practice signs, feeling kind of silly"), Woodcock honed her skills when her roommate left her alone with a friend who was deaf.

"Out of sheer necessity, we had to find a way to communicate, and I found that I had a knack for interpretation."

When England was 11, she was intrigued by learning to talk with a friend's sister who was deaf. Soon she was meeting more deaf people and their friends. After a young deaf woman became her mentor, her vocabulary exponentially multiplied.

Mortimer says that students who intend to become interpreters have "a great opportunity as an occupation." Some employers pay a higher salary to people who can sign, while agencies who deal with large numbers of the general public are particularly in need of sign language interpreters, he says.

Indeed, adds Woodcock, freelance interpreters earn between $25-$60 per hour.

Skills can be used right away -- two Eisenhower graduates were hired as interpreters by the school district -- or further developed in college.

Davis senior Jacob Ivy-Bailey thinks he'd like to do just that, so he's planning to attend Gallaudet University in Washington, D.C., to become a court interpreter. While primarily a school for hearing-impaired students, it also has interpretation classes for people with hearing.

Or, in the case of Alaura Stiltner, she hopes to dovetail the skill with a profession. She wants to take the Eisenhower class for three years -- "The teacher is amazing" -- then use the skills in physical therapy or sports medicine.

Just about as much goes on outside both classrooms as in. One Friday night a month, students receive extra credit if they attend Deaf Chat Coffee time, organized by members of the deaf community, at the Starbucks on 56th Avenue.

"The first time the kids go, they're scared to death, but they have such a good time," says Woodcock. "It's a friendly bunch of people in the deaf community, and they're very supportive."

Sunshine Cano, a community advocate for the South Eastern Washington Service Center of the Deaf and Hard of Hearing on North Fourth Street in Yakima, welcomes student participation in Deaf Chat Coffee.

"It's good for anyone learning ASL to come," she says, noting that there are about 50 active members in the local deaf community.

Some members of England's class interpret for deaf athletes in Eisenhower's after-school sports, and several help interpret at musical performances in the school's Little Theatre and during assemblies and graduation ceremonies.

Students from both schools recently helped deaf pupils at Whitney Elementary School build gingerbread houses, practicing their signing at same time, and they will also be working one-on-one with deaf youngsters there each week for the rest of the school year.

Because no deaf students attend Davis, Woodcock brings people from the deaf community into the classroom. For instance, one of her deaf friends frequently visits to play games with students.

England, too, believes in the importance of exposure not only to deaf people but also to any group that may not be mainstream.

Underscoring the equal value of all students, England engages in what she calls diversity acceptance education. Once a week, special education students come to the signing classroom where England's students teach them sign.

"Every population here is part of the family," England emphasizes.

Woodcock agrees. "What we're doing is teaching the kids not to be afraid of someone who is different."

English also extends her philosophy to sharing pearls of wisdom she thinks all students need, such as developing manners.

"I'm glad to have students say that I taught them sign, but even better is if they say I taught them some fabulous life lessons," England notes.

Both teachers are gratified by the enthusiastic response to their classes.

"Students are so tired and so distracted and have so much on their plates, but it's extremely rewarding when the light bulb goes on, and they're eager to learn what's next," says English.

And my new signing aide at school is...

2009-01-05T20:20:00.000-08:00

Drum roll please...daddy! My wonderful aide, Jess, graduated at the end of last quarter. The school has been looking for a new aide to sign to me, but so far no luck. There is a substitute aide lined up for next week, but no one for this week. Evan is "needy" enough that the preschool supposedly can't take him without a one-on-one aide (I know--I don't think that sounds quite right either, but this is second-hand information. I didn't actually talk to anyone at the school). Jeremy is going to fill in this week so Evan won't miss any schoo. Keep your fingers crossed that we find a permanent aide soon.

Meet Bosley

2009-01-04T19:58:00.000-08:00

We were adopted by a new kitty today. He had been hanging around a neighbor's house, and they came by with the cat to see if he belonged to us. If the cat was a stray, they were going to take it to the shelter. I had to do a double take--this cat looks very similar to Kitt Kat (our cat that disappeared last September). The cat is very friendly, and came right in the house. Once I petted him and he started purring, it was all over. So we have a second cat again. His name is Bosley (while I was talking Jeremy into letting me keep the cat, a commercial for the Bosley Hair Regrowth System came on TV--it seemed like a good name!).

Bosley really likes Evan--he followed Evan around most of this evening. Evan is fairly oblivious to the cat (he doesn't pay much attention to Snickers either). Snickers seems less than thrilled to be a "big brother." He has only growled and hissed so far, but until we get Bosley fixed, we're going to keep them separated.

These are two pictures of Bosley--he was more interested in sniffing the camera, than holding still so these were the best I could do.

This is a picture of Kitt Kat--Don't they look a lot alike?

Favorite Thing

2009-01-01T19:09:00.000-08:00

Now that the holidays are over, Evan has been getting down to some serious playing. And his favorite plaything...one of his new Christmas toys, maybe? Sadly, no. Evan recently decided he loves VHS tapes. And not to watch, either. He just likes carrying them around, looking at them (especially the bottom side--he giggles at the two big white "dots"), lining one up in a particular way on the shelf (standing on end, with the previously mentioned dots facing out). He will empty our cabinet of VHS tapes all over the floor, and then pick one to play with. Earlier today, I caught him carrying daddy's Crusty Demons of Dirt motorcycle video around. He also likes my gas-permeable contact lens fitting videos. Evan, we have Blue's Clues and tons of Elmo tapes (not to mention Signing Time DVDs)--why can't you pick one of those???

2008

2008-12-28T20:05:00.000-08:00

Photo and video editing at www.OneTrueMedia.com

The weather outside is frightful...

2008-12-18T20:02:00.000-08:00

...but inside is nice and toasty. Mommy has been busy taking pictures of me for our Christmas card. She wanted to post her two favorites (that didn't actually make it on the card).

Why mommy, are you making me hold this giant letter Y?

This is Evan tonight (post surgery)--pretty handsome boy :)

Really?!?

2008-12-18T19:48:00.001-08:00

I got a kick out of this "gift" courtesy of the Washington State Department of Health. Obviously, the person who sent this out knows nothing about our child. To begin with, Evan is 3 1/2 years old now...there would be quite a few catch up entries if I were to try and use this booklet.

The best part is how much room they allow for notes! Granted, my record-keeping is probably taken to the extreme (I have two big three-ring binders full of Evan's test results, reports from specialists, evaluations, etc). I don't think Evan has ever had a well-child visit in his life--we always have some sort of problem that needs investigated. But I find it hard to believe there would be enough room to record much of anything for a typical child!

Successful Surgery

2008-12-17T08:14:00.000-08:00

The boys made it home around 10 pm last night. Evan did not appear to be in any discomfort, and was wired (I guess we know the answer to the question "Does 4 hours of general anesthetic equal a nap?"). He wanted to walk the loop around the kitchen with Jeremy, and didn't go to sleep until 3 am this morning!

The urology surgery was uneventful, and he woke up from anesthesia sounding pretty junky (normal for him), but otherwise fine. I understand he was combative during the pre-op, so much so that he was given some sedative. He immediately turned into "noodle boy" and they were even able to do the CT and MRI with just the sedative.

The hearing test results were interesting. There was no response aided or unaided on the right side (the side with his bendy ear). Aided on the left side, the results showed a moderate hearing loss. The cochlea appears to be functioning better than was thought--it's the middle ear that isn't working properly. This is interesting, as we don't really notice any difference in Evan's behavior with his aid on--he doesn't act like he hears anything. The bone conduction aid was mentioned again, which we did try briefly and also didn't seem to make much of a difference. We will know more about how we are going to proceed after Evan's appointment with Dr. Sie in February (she would be Evan's surgeon for the implant).

Surgery Today

2008-12-16T12:56:00.000-08:00

I didn't post about this earlier (I didn't want to jinx it), but Evan is having surgery at Children's today. It is the long awaited urology procedure along with testing to determine cochlear implant candidacy (MRI, CT, and BAER hearing test).

The boys checked in at Children's at 11:30 this morning. I just called Jeremy to see if there were any updates, but went right to his voicemail. Knowing how difficult cell reception at the hospital is, I'm not surprised. I'll update when I know more.

***Update***

I talked to Jeremy around 4:30. Evan had his CT and MRI done under sedation, before going under general anesthesia. After the scans were finished, he had the urology surgery which took around 2 hours. Dr. Lendvey said he did very well, and was "like a rock" respiratory-wise during the surgery (Evan has had issues with keeping his oxygen levels up under anesthesia in the past). At the time Jeremy called, Evan was having his hearing tested. He would probably go to recovery around 5:00, and if all went well they would get to leave Children's around 6:00.

Chairs

2008-12-12T14:30:00.000-08:00

Oh yes. I pushed the chair over here and climbed up into it all by myself.

Oh boy. I'm contemplating all the things I can get my hands on now. With this new skill, the possibilities are endless!

Someone is feeling better today :)

2008-12-01T18:09:00.001-08:00

Check out my mischevious grin from this morning. Mommy had just finished taming my snarl of curls with a wet comb, and wanted to get a picture of me with my hair all slicked back. It's not a great picture of my hair, but mommy loves my huge smile.

Status quo

2008-11-30T10:13:00.000-08:00

Not much has changed here. Yesterday was Evan's last day of steroid syrup, and he is not any better. His pediatrician is arranging a repeat chest xray this morning, and we'll go from there. This bug is seriously kicking all of our behinds...we'll be so glad when it's over. I'm staying home from work tomorrow. That's pretty sick...I haven't called in sick to work since Evan was born.

1:30 pm - Update

We are back from the hospital. Evan's chest xray looked good, and Dr. Oldham felt his breathing was not labored or wheezy, and his ears were clear. Evan really perked up for Dr. Oldham--he was walking all around the imaging waiting area, looking up at the lights and giggling (not the same boy that this morning had us making the worried after-hours page...). Dr. Oldham didn't think any more prednisone was necessary, and said we could use our discretion on the albuterol. He thought getting up and walking around was the best thing for Evan--it would expand his lungs and really help him cough up the extra mucus. In fact, he suggested that we take Evan outside for a walk when we got home, provided Jeremy & I felt up to it (we were a sight I'm sure, both decked out in surgical masks and we brought our own hand sanitizer). Jeremy and I both got prescriptions for azithromycin (it is likely we have secondary bronchitis, and there is no sense in us passing bronchitis back to Evan now that he's getting well--Evan is already on antibiotics). All-in-all, a very productive visit.

We stopped at Rite-Aid to pick up our drugs, and the trip to town wore Evan out. He's napping right now. We'll see about that walk when he wakes up.

I also wanted to clarify I completely understand my family's not wanting to come share our germs on Thanksgiving Day. They have called once or twice every single day this weekend to check on us, and suggest some helpful home remedies (I'm still working on getting the house more humidified, Mom...). I did not mean to sound bitter in my earlier posts--can we just say this bug is keeping me from thinking clearly???

Our Thanksgiving...

2008-11-28T19:28:00.000-08:00

This year, the three of us stayed at home for Thanksgiving, Black Friday, and will continue to be home for the forseeable future. Whatever the bug Evan has is, he has shared with Jeremy and I. We are all achy, coughy, and stuffy-nosed. I'm sure I will get some flack from my parents for posting this, but they opted to give our family a wide berth this weekend (the original plan was we would go to Yakima for Turkey Day). I wasn't too sick yesterday, and made us cornish game hens (no time to defrost a turkey), and the typical sides.

Evan is hanging in there, but still is obviously not feeling well. He will have 5 minute bursts of energy after he gets his albuterol treatments, and will get up and toddle around. But then it's back to laying on the floor. I went to go pick up some more oxygen tanks for him--Jeremy got 3 E tanks Wednesday night, and by this morning they were all empty (oxygen goes quickly when it's run through the CPAP). I returned the empties and picked up 3 full ones. When I asked if we could have any more for the weekend, the medical supply company ended up sending an oxygen concentrator home with me (talk about a step backwards...). It's only temporarily...hopefully very temporarily.

Jeremy and I woke up at 3 this morning both feeling very wheezy and congested. If there is a plus to all of Evan's breathing treatments, it's that Jeremy and I both took advantage of the albuterol nebulizer last night (it really helps--I highly recommend it with a chest cold).

One Sick Boy

2008-11-25T20:03:00.000-08:00

Unfortunately, Evan's bug has gotten worse in the past 24 hours. Last night he was very restless and set his alarm off frequently (we left the CPAP off because the night before it seemed to worsen his cough, and last night he wasn't sleeping soundly enough to put it on without waking him).

Jeremy took Evan in to the doctor's office this morning...they were there from 9:30 am until 1:00 in the afternoon, by the time Evan had his blood drawn, a chest xray, and a nose culture. Evan can stand in front of the xray panel, so he doesn't have to be crammed into the tube contraption any longer. Blood draws just get harder as he gets older--it required 3 phlebotomist, 1 daddy, and 2 sticks. Dr. Oldham came in just to see Evan (this was his normal administrative time), that's how sick our little guy is. The dreaded words "admit him to the hospital" briefly came up, but fortunately did not happen (possibly knowing we have CPAP, oxygen, and a pulse oximeter at home helped?). He is on oral prednisone, cefprozil antibiotic, and albuterol every 4 hours. And tylenol.

When I came home from work, Evan was walking daddy around the kitchen circuit, and was not looking terribly ill. The prednisone must have given him a little boost, but within about 5 minutes he was laying on the floor looking pretty sick.

Jeremy called and cancelled his surgery for the 2nd...it was pretty obvious it wasn't going to happen. Hopefully, third time will be the charm???

Rough Night

2008-11-24T11:41:00.000-08:00

Evan is sick again. Last night was a rough one--he woke up at 11 pm with a low fever and didn't go back to sleep until 2 am. We had planned on keeping him home from preschool all this week, to minimize the chances of him getting sick before his surgery on December 2nd (this is the urology surgery and CI candidacy MRI and BAER, rescheduled from October because of illness). Oh, the best-laid plans...

I'm reviewing the events of the past week to see where he would have picked it up from. He was at preschool last week. I took him out shopping on Saturday and Sunday, but was careful to disinfect all the touchable parts of the shopping carts. I did catch him yesterday chewing on one of his shoes, but that seems awfully fast to come down with symptoms.

Hopefully with lots of rest he'll get over this in time to keep his surgery appointment (we can always hope, right?).

Mommy and Me Time

2008-11-18T13:09:00.000-08:00

Daddy was busy doing some work on a neighbor's house last weekend. So it was just mommy and Evan at home all day Saturday and Sunday. Evan is a big time daddy's boy, so I was wondering how this would go over. There were tears at the baby gate when daddy said goodbye, but it didn't take long for them to subside. We must have walked 50 laps around the kitchen. We resurrected a fun trick Evan used to love: spinning him on his back on the kitchen floor. He loves it still--he would come and get me from the other room, walk me to the kitchen, lay down and pull my hand to his leg (my "handle" for spinning him). We played cars and blocks and went for a walk. Evan let me snuggle him for a few minutes early Saturday evening. It was the best weekend we've had in a long time.

Charge it for CHARGE

2008-11-16T12:07:00.000-08:00

The CHARGE Syndrome Foundation has started a brand new fundraising campaign called "Charge it for CHARGE" (catchy, isn't it?). Below is the address of Evan's page:

https://www.kintera.org/faf/donorReg/donorPledge.asp?ievent=293919&lis=1&kntae293919=6F0DE842FB294BC989368EEBA149BE0A&supId=239576325

I realize times are tight, and we have to pick and choose what charities are the most important to us personally to support. But if during the holiday season you find you have some available funds that are in need of a charitable organization, I would encourage you to consider the CHARGE Syndrome Foundation. The Foundation truly did write the book on CHARGE Syndrome--the education it provides for families and professionals is critical for the health and advancement of individuals born with CHARGE Syndrome.

***Initially the above web page was not correct. I have since updated it, and it appears to go directly to Evan's fundraising page. If it does not, you can search for our page by name--it's under Sarah Storrs***

Happy Halloween from Fireboy Evan!

2008-10-31T18:37:00.000-07:00

Briefs

2008-10-31T18:28:00.001-07:00

Since those first couple of lucky pees in his potty chair, Evan has not show the least bit of interest in potty-training. I saw these tiny Mickey Mouse briefs at Target a few months ago, and couldn't resist buying them for him to wear "someday". They were washed and put away in Evan's dresser until I saw them this afternoon.

Doesn't he look so grown-up? Evan really seemed to notice that something was different...or at least less bulky. He didn't stay dry for long, maybe 10 minutes before there was an accident and we put him back in a diaper. But this is a definite goal for all of us now.

Pictures from the past week...

2008-10-28T20:46:00.000-07:00

The first group of pictures were taken in our friends the Kocher Family's orchard. They have a cider-pressing party every year--this was the second time Evan and I have gone. Jeremy will probably be mad I posted the picture of him contemplating the apples, by my camera ran out of batteries early on in the day so that was as good as it got.

Today, Evan's preschool class went Trick-or-Treating around the Psychology Building. Evan was a Fireman (we were not the only parents with this idea...). Jess was a pirate--I love the parrot that is sewn to his shouler. Jeremy was guilted into dressing up by Evan's preschool teachers--he put together his "grease-monkey" costume in under an hour. Priceless!

A "Jer" of All Trades

2008-10-23T19:03:00.000-07:00

So this has nothing to do with Evan, but I have to brag that my husband is the best! Adding to the list of things he can do: slit-lamp repair man (for those not up on the opto lingo, a slit-lamp is essentially a microscope mounted on its side--I use it during every single exam).

There is some back-story here. I've been wanting to buy another slit-lamp for my second office, but new ones are outside my buget. So I had been shopping for a good used one. I found one that was the exact same model as one I already own (vintage 1982). The seller was a retiring optometrist in the midwest. She partially disassembled and packed the slit-lamp. I scheduled a pickup with FedEx (not an easy task). When we unpacked the slit-lamp, I was very dismayed to find it was damaged--there was a 1/4 inch metal piece that was sheared in two, and there were some dents in the housing for the optics. It still worked, but I was upset that it wasn't "perfect" (with the way my life is, you might be tempted to think I would be over that by now...). I contacted the seller, and she agreed to refund my money right away.

Then we began the process of turning in a damage claim to FedEx. The situation was complicated by the fact that I, the buyer, had ordered the pick-up and payed for the shipping (normally the seller pays--this turn of events had all the customer service agents in a tizzy). FedEx wouldn't let me file the claim--they made the seller do it. But after she filed the claim, they made me write a letter releasing "my" reimbursement back to the seller. Then they had to inspect the damage to decide if they would pay. I thought that meant they would come by my office to look at the slit-lamp. Wrong--I had to repack it and send it back to FedEx "head-quarters." The inspector ruled that the equiment was not packed properly, but it doesn't really matter because if you read the fine print on the shipping order they do not honor any "Fragile" or "This Side Up" marks on the box. It also states that the item has to be packed well enough to not be damaged if it's dropped three feet (the distance between conveyer belts). I don't know why they even have a claim process--it's pretty obvious they have no intention of ever paying for any damage. My interpretation: don't send anything by FedEx you actually care about that is not replacable.

Evidently, the inspector assumed that no one gave a crap about the slit-lamp anymore, because they just threw all the pieces back in the box. FedEx attempted to deliver the box back to the selling optometrist, who during this time had closed her office. They called me and asked if I wanted it back--they would have just thrown it away--I said I'd take it. The box appeared again at my office 3 days later, looking every bit like it had been transported half-way across the country twice. It sat there for two weeks--it made my stomach hurt just thinking about what a waste it was.

Finally, I brought the slit lamp home. Jeremy opened up the box and it was really a mess--broken bits of plastic and glass, paint all scuffed up, housings dented... He didn't make any promises, but he said he'd "see" if he could fix it. The first thing he did was weld together the metal part that was broken--he sanded and painted it and you can't even tell it was ever broken. Then he reassembled and glued all the broken plastic parts. He realigned the optics. There are two parts that could not be repaired, and I'll have to see if I can order replacements. I still don't know if the lamp part works yet (the lightbulb was broken during one of the shippings), but it looks really good. Had I know he would be able to do such a good job, I would have cut my losses and just kept the slit-lamp in the first place.

I was absolutely amazed when I walked in through the door tonight. I know what love is...it's a man who is willing to spend 10 hours putting together a piece of equipment that most would write off as a lost cause because he knows how much his wife hates wasting and throwing things away. And I also know what shipping company I will NEVER use again as long as I live...as soon as I have some time, I am sending FedEx a complaint letter and am closing my newly opened office shipping account.

Pumpkin Patch

2008-10-21T17:44:00.001-07:00

Evan's preschool class went to the pumpkin patch this morning. Daddy went along also.

Evan's first ride on the school bus (Jeremy takes him to school each morning, so this is all new to Evan)

Taking a break from pumpkin hunting (Evan was interested in the "orange balls" briefly)

Amazingly, Jeremy was able to take a class picture. Evan's interpreter, Jess, is sitting right behind Evan.

Must See!

2008-10-11T21:18:00.001-07:00

Photo and video editing at www.OneTrueMedia.com

Happy Birthday McKenzie

2008-10-07T18:59:00.000-07:00

Our neighbor McKenzie just turned 4 (she is an ex-26-weeker--18 ounces at birth!). She had a really fun birthday party at Kid's Castle in Yakima on Sunday, and Evan was invited. Kid's Castle is basically a giant McDonald's Playland, and it's in the back of a gymnatics center. There was open gym and a inflatable jumper for the kids to play on also. Evan had a blast. Jeremy and I will probably take him this winter--the activities are very similar to PT (and admission is way cheaper than a PT visit!). I took lots of pictures of Evan (and a few of the Birthday Girl as well).

Make a wish, McKenzie!

Evan's first time in a jumper...he didn't understand how to climb over to the slide part, but had fun crawling around the first "room."

Walking on one of the many trampolines (difficult because Evan didn't want me holding his hands, but that was one of the facility "rules"--I had to hold his hands if we were on together. By this point, I had given up and just carried him).

Rescue time--the foam blocks were swallowing Evan up.

These plastic snaky-things occupied Evan for long time. They were at the castle entrance--he played with them for at least 15 minutes before even venturing inside.

"Gingerbread Man"-ing it down the slide--this is how Evan looks in every picture we take of him on the slide. It cracks me up every time.

Time to go home. Evan assisted daddy with his shoes.

Surgery...it didn't happen

2008-10-07T18:49:00.001-07:00

Not surprisingly, the urologist opted to cancel Evan's surgery. His scheduler had enough notice she thought she would be able to move some kiddos scheduled later on in October to the large slot Evan vacated, meaning Evan could have their surgery time. So (fingers crossed), the surgery/MRI/CT/BAER could still happen this month. Evan you have to stay well this time--we all have to say well! We're all a bunch of sickies right now--mommy thinks she has a sinus bug, daddy has a cough and felt plain crummy all day today, and Evan looks to have an ear infection (some crusties coming out of his right ear).

Lessons

2008-10-03T21:14:00.000-07:00

What a week...as always, full of lessons learned.

1) How close before a surgical procedure Evan will get sick (and he will--I swear it's a law that we have to reschedule at least once...) is inversely proportional to the number of months out we had to schedule the surgery. Next Tuesday was supposed to be his urology surgery, brain MRI, and BAER hearing tests. We haven't officially cancelled yet, but it's not looking good.

2) Even though he hadn't used it for over nine months, that still was not long enough to say Evan would never need oxygen again and turn all the tanks and regulator back to the medical supply company. After a restless night of lots of desats, Jeremy decided Evan needed oxygen for the weekend. It took Jeremy most of today to secure two small oxygen tanks from the welding supply store in town and a regulator from the hospital. I'm glad we have it, but it feels like a step backward (it felt good to be done with all that).

Lucas

2008-10-03T21:06:00.000-07:00

Please keep our CHARGE friend Lucas' family in your throughts and prayers. He passed away yesterday. I did not know his mom, but she also kept a blog about her sweet little guy. I've been reading her old posts and looking at the pictures...Lucas' complications from CHARGE were a little bit different, but many things were so very similar.

This picture of Lucas sleeping in his exersaucer reminded me so much of Evan--not only do they have the same bendy ear, but Evan can fall asleep just about anywhere also.

CHARGE Get-Together

2008-10-03T17:00:00.000-07:00

Last weekend, we hosted the semi-annual Washington state CHARGE Family get-together. It was fun to see how much Max, Burke, Maya and Evan have all grown since we've started doing this. I've posted a few of the pictures below--most of my pictures involve Evan's horse (this was the favorite toy, and one Evan doesn't mind sharing at all). Thanks for making the drive over to the East side this time--it was good to see everyone!

Burke knows all about spring horses--giddyup!

Max's turn.

As busy as these boys are, it's surprising I got them all in one shot.

Maya was very into Grandma Key's watch.

Are they gone yet?? I'm ready to have my house back now :)

Giving new meaning to the term "feeding tube"

2008-09-25T23:12:00.000-07:00

So I think Evan has made the connection between his feeding tube and eating. It's going to take a pretty strong bite to get any food that way, Evan!

Hand Washing

2008-09-18T19:42:00.001-07:00

I don't know what happened to the little boy who 4 months ago was completely terrified of water. Evan loves playing in the water now. He will pull his step stool up in front of the bathroom sink and put his hands in the dry sink. Thankfully, he hasn't figured out how to turn on the faucet yet (Heaven help us when he does). When the water is on, he can make quite a mess! ***Update from daddy--as I was typing this, he figured out how to turn it on...

Getting ready to wash up...

Water, water squrting everywhere--such fun!

What--doesn't everyone get this wet after a thorough hand washing? You must not do as good of a job as I do.

PS Third day of school went well. Evan is very interested in the water fountain (are we surprised?). Daddy and J. are teaching Evan how to push the button and turn the water on. Evan licked the water today--the cold water must be very refreshing for someone who never has liquid in their mouth.

Choosing Socks

2008-09-17T22:17:00.000-07:00

Evan picked out the pair of socks he wanted to wear this morning. Jeremy was folding laundry, and had a pile of Evan's socks on the bed. Evan picked up one pair at a time, and would throw the ones he didn't want off to the side. There was one pair he didn't toss away, and that was the pair he wanted to wear. He pulled the pair apart, and laid down with his feet in the air (that is his way of helping us put his socks on). The socks he chose were orange and blue stripes--didn't match the rest of his outfit at all--but I think that's a pretty standard wardrobe selection for a three year old.

PS Evan's second day of school went pretty well also. There were more kids in the class this morning, so the teachers were busy getting the new kids all settled in. Evan is getting used to J. very quickly--he crawled up to J. and wanted him to walk with him. It's going to be a great year for Evan--I just have a good feeling about it.

Jeremy had a close call with another g-tube incident--he discovered before leaving home this morning the mic-key button balloon had a tiny hole in it (that's why it deflated yesterday), so changed to a new button.

On to Day 3!

First Day of Pre-School!

2008-09-16T20:50:00.000-07:00

All in all, a very good day for Evan. I didn't want to jinx it by posting on the blog, but the special ed director at Kittitas told me last Friday they had a very promising candidate turn in an application to be Evan's aide. She interviewed him on Monday and he was at school this morning waiting to meet Evan. We feel very blessed that J. applied for the position--he is fluent in ASL and will be a wonderful example for Evan this year.

Jeremy stayed today (and is planning on staying all this week) to help with the transition for Evan. I came for the first half hour, and got to meet J., help Evan put his bag into his cubby, and take pictures commemorating the occasion! First was independent play--Evan is very good at this already, and seemed excited to find toys he has some familiarity with (they have a Busy Box--he was all over that).

Next was circle time. The lead teacher sang a roll-call song, and each child is supposed to come put their name card in the attendance board. Out of the 5 kiddos in class this morning, only 1 was able to do this--and he was in the class last year :) One of the teachers told Jeremy this is a fun way to see progress--at the beginning of the year, most of the kids can't do this task, but are able to by the end of the school year. The lead teacher attempted to read a story, but most of the kids were ready to move on. Evan stayed on the rug, rocking back and forth, but he stayed on the rug! I wondered how he would do with circle time...

They looked at books independently instead of group story, and then it was snack time (Evan got to play some more, since he can't eat the snack). Then the kids went to a different room that has gross-motor activities like swings and ramps. Evan really liked this room, and didn't want to transition to outside. Evan surprised daddy, when he hopped right into a little tykes car, shut the door, and pushed and steered his way around (our neighbor McKenzie has one of these, and Evan's sat in it before, but we had no idea he knew how to make it go).

Evan only had a small melt-down part of the way through the morning. Jeremy interrupted his play to change his diaper, and this made him mad and started building gas. When Jeremy vented the g-tube, Evan kicked his legs up around the vent tube and pulled the button half-way out (which made him even madder). Jeremy was able to get the balloon back in and Evan calmed down. Note to Max: We beat you, less than one day in school for a g-tube incident (ok--it didn't come all the way out, so not as bad).

Here are some pictures from this morning:

On our way out the door, with an apple for the teacher (Evan didn't want to touch it because it was cold)

Ready...set...let's go in!

Ahh...Busy Box! This is something I recognize and know exactly how to do.